Both sides of the couch: a qualitative exploration of the experiences of female healthcare professionals returning to work after treatment for cancer

The aim was to explore the experiences of healthcare professionals (HCPs) who had treatment for cancer and then returned to work. The intention was to identify how HCPs' experiences differed to those of the general public with cancer, and also to explore how HCPs were reintegrated into the workplace following treatment. An interpretive phenomenological approach was employed and conversational interviews were undertaken with 13 women volunteers from a variety of healthcare disciplines including nursing, midwifery, social work, physiotherapy, radiography and general practice. During analysis 59 categories were constructed which were accommodated within 14 themes; six of which are reported here. Participants used knowledge to make sense of their diagnosis, severity and extent of cancer. Several participants covertly accessed their medical records to find out more about their clinical condition. Familiarity with both the environment and oncology personnel resulted in benefits and disadvantage in equal measure. Managers responded to participants' return to work in a variety of ways, and involvement of Occupational Health Departments was inconsistent. Healthcare professionals had distinctly unique experiences because of being patient and provider, and each made personal decisions about sharing their cancer experiences with patients.     

Interaction patterns between parents with advanced cancer and their adolescent children

Objective: Advanced cancer profoundly affects those with the illness and their families. The interaction patterns between parents with advanced cancer and their adolescent children are likely to influence how a family experiences a parent's dying process. There is little information on such interactions. This study aimed to develop an explanatory model that explains interaction patterns between parents with advanced cancer and their adolescent children and to identify strategies to prepare children for their lives after a parent dies. Methods: Semi‐structured interviews were conducted with 9 parents with advanced cancer, 7 of their spouses/partners, and 10 of their adolescent children. The interviews were recorded, transcribed verbatim, and analyzed using a constructionist grounded theory approach. Results: Twenty‐six family participants were interviewed. Their main concern was not having enough time together. In response, they described a four‐stage process for optimizing the time they had left together: coming to know our time together is limited, spending more time together, extending our time together, and giving up our time together to end the suffering. The adolescents and their ill parents did not change their interaction patterns until they realized their time together was limited by the advanced cancer. Then they spent more time together to make things easier for each other. Conclusions: Time was of great importance to the parents and adolescents; all the participants structured their stories in relation to the concept of time. The model reflects the dynamic process by which families continuously adapt their relationships in the face of advanced cancer. Copyright © 2010 John Wiley & Sons, Ltd.     

Lack of communication between healthcare professionals and women with ovarian cancer about sexual issues

Gynaecological cancer has been shown to affect women's sexual functioning, yet evidence suggests that healthcare professionals rarely discuss sexual issues with women diagnosed with a gynaecological cancer. Few studies have investigated why there is a lack of communication between healthcare professionals and women about sexual issues. Our study investigated the attitudes and behaviours of the 27 doctors and 16 nurses treating women with ovarian cancer in our centre towards the discussion of sexual issues, and also investigated women's experiences of such communication. Our findings showed that although most healthcare professionals thought that the majority of women with ovarian cancer would experience a sexual problem, only a quarter of doctors and a fifth of nurses actually discussed sexual issues with the women. Reasons for not discussing sexual issues included 'it is not my responsibility', 'embarrassment', 'lack of knowledge and experience' and 'lack of resources to provide support if needed'. While some of these reasons were also viewed as barriers by the women, the results demonstrate that there is a need from the women's perspective to improve communication about sexual issues, although the most appropriate approach to this remains to be investigated.     

Hospital-based home care for children with cancer: a qualitative exploration of family members' experiences in Denmark

The study aims to describe the experiences of a hospital-based home care programme in the families of children with cancer. Fourteen parents, representing 10 families, were interviewed about their experiences of a hospital-based home care programme during a 4-month period in 2009 at a university hospital in Denmark. Five children participated in all or part of the interview. The interviews were transcribed verbatim and analysed using qualitative content analysis. The findings indicate that hospital-based home care enabled the families to remain intact throughout the course of treatment, as it decreased the strain on the family and the ill child, maintained normality and an ordinary everyday life and fulfilled the need for safety and security. According to family members of children with cancer, hospital-based home care support enhanced their quality of life during the child's cancer trajectory. Our study highlights the importance of providing hospital-based home care with consideration for the family members' need for the sense of security achieved by home care by experienced paediatric oncology nurses and regular contact with the doctor. In future studies, interviews with children and siblings could be an important source of information for planning and delivering care suited to the families' perceived needs.     

Transitioning childhood cancer survivors to adult‐centered healthcare: insights from parents,adolescent, and young adult survivors

Objective: To determine Latino adolescent and young adults (AYA) cancer survivors' perceived barriers or facilitators to transition from pediatric to adult‐centered survivorship care and to also assess the parents' perspective of care. Methods: Partnering with a community‐based organization that serves Latino survivors, we conducted a qualitative, constant comparative analytic approach exploring in‐depth themes that have salience for Latino pediatric cancer survivors seeking care in the adult healthcare setting. Twenty‐seven Latino AYA survivors (?15 years of age) completed key informant interviews and 21 Latino parents participated in focus groups. Results: Both AYA survivors and parents identified two major facilitative factors for survivorship care: Involvement of the nuclear family in the AYA's survivorship care in the adult healthcare setting and including symptom communication in late effects discussions. Barriers to care included: perceived stigma of a cancer history and continued emotional trauma related to discussions about the childhood cancer experience. Conclusions: Barriers to survivorship care include cancer stigma for both patient and nuclear family, which can impact on seeking survivorship care due to constraints placed on discussions because it remains difficult to discuss ‘cancer’ years later. Future research can evaluate if these findings are unique to Latino childhood cancer survivors or are found in other populations of AYA cancer survivors transitioning to adult‐centered healthcare. This community‐based participatory research collaboration also highlights the opportunity to learn about the needs of childhood cancer survivors from the lens of community leaders serving culturally diverse populations. Copyright © 2010 John Wiley & Sons, Ltd.     

Care and support needs of children and young people with cancer and their parents

The importance of psychosocial support services for children with cancer and their families is recognised but evaluation of such services is less well developed with little information available about different patterns of provision. This paper provides an overview of psychosocial support children and their families in the UK receive during and after treatment. It reports the results of a postal survey of 303 families, within which parents and children identified their satisfaction with support services and also areas of unmet need. Satisfaction was identified in a range of areas, including medical information and support from nurses and social workers. However, areas of unmet need were also highlighted, especially age appropriate facilities, emotional support and information in different formats. Although British government policy currently seeks to develop standards and guidelines of care throughout the National Health Service, this paper demonstrates that there is still a need to develop psychosocial support services and work towards recently established guidelines in order to ensure that families receive flexible but equitable packages of care and support, wherever treatment is received.     

Help‐seeking experiences of men diagnosed with colorectal cancer: a qualitative study

Advanced‐stage diagnosis of colorectal cancer (CRC) leads to poor prognosis and reduced survival rates. The current study seeks to explore the reasons for diagnostic delays in a sample of Australian men with CRC. Semi‐structured interviews were conducted in a purposive sample of 20 male CRC patients. Data collection ceased when no new data emerged. Interviews were audiotaped, transcribed and thematically analysed using Andersen's Model of Total Patient Delay as the theoretical framework. Most participants (18/20) had experienced lower bowel symptoms prior to diagnosis. Patient‐related delays were more common than delays attributable to the health‐care system. Data regarding patient delays fit within the first four stages of Andersen's model. The barriers to seeking timely medical advice were mainly attributed to misinterpretation of symptoms, fear of cancer diagnosis, reticence to discuss the symptoms or consulting a general practitioner. Treatment delays were a minor cause for delayed diagnosis. Delay in referral and scheduling for colonoscopy were among the system‐delay factors. In many instances, delays resulted from men's failure to attribute their symptoms to cancer and, subsequently, delay in diagnosis.     

Immigrant to Canada, newcomer to childhood cancer: a qualitative study of challenges faced by immigrant parents

Background: Given the increasing numbers of immigrant families in Canada, it is imperative that healthcare providers (HCPs) understand the caregiving experiences of immigrant family caregivers. Our study aimed to explore any special challenges faced by immigrant parents of children with cancer and to identify supportive factors. Methods: A constructivist grounded theory approach was used. Participants included 50 first generation Chinese and South Asian parents of children with cancer who were at least six months post‐diagnosis. Recruitment took place at six Canadian pediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi. Analysis involved coding and the use of the constant comparison method. Interviewing continued until no new themes emerged. Results: While immigrant parents described many challenges faced by any parent of a child with cancer, the context of being an immigrant made certain experiences particularly challenging. Parents described challenges in the following areas: managing caregiving demand and financial strain, accessing support from others, and interfacing with the healthcare system. Parents described receiving a range of practical, emotional, social and informational support from extended family, their workplace, other cancer families, community organizations and HCPs. Conclusions: Our study addresses an important gap in the research literature by providing practical insight into the experiences of immigrant family caregivers. Our findings may help to inform the development of pediatric oncology policies and programs in ways that respond to the unique needs and challenges of culturally and linguistically diverse families. Copyright © 2011 John Wiley & Sons, Ltd.     

Family members' experiences, information needs and information seeking in relation to living with a patient with oesophageal cancer

A qualitative study was conducted with the aim to describe family members' experiences, information needs and information seeking in relation to living with a patient suffering from oesophageal cancer. Data were collected by means of semi-structured interviews with nine family members. A content analysis was used in order to organize data. It was found that family members were not aware of the severe diagnosis and the illness caused intrusions on the family. The time following diagnosis family members' information seeking was low. They used interpersonal as well as mass media sources to obtain knowledge about and handle the uncertainty related to the illness. Some family members did not actively seek information. In conclusion, healthcare professionals are expected to improve quality of cancer care. These improvements are unlikely to occur without an understanding of family members' needs. This study shows that the family members were unprepared of receiving a diagnosis of oesophageal cancer. They emphasized the importance of including the children in the care given. Moreover, the whole family was faced with uncertainty, which led to intrusion on everyday life. Therefore, family members used different strategies for managing the uncertainty, whereof one was searching for information. The primary source of information was the physician.     

Information needs of oncologists,general practitioners and other professionals caring for patients with cancer

Oncology is a rapidly developing field with a growing number of publications every year. The main goal of this survey was to learn more about the information needs of oncologists and general practitioners. Data were collected using a standardised questionnaire developed in collaboration with the German Cancer Society (Deutsche Krebsgesellschaft) and the German Association of General Practitioners (Deutscher Hausärzteverband). A total of 495 questionnaires could be evaluated. Medical congresses were the preferred source of information for all participants. General practitioners preferred textbooks, while oncologists preferred journals and the Internet (all p < .001). Reasons for a lack of confidence during patient consultation were lack of time (60% of participants), lack of knowledge (61% of general practitioners and 26% of oncologists) and lack of data (>50%). Oncologists felt more confident in searching scientific databases than general practitioners did. Both groups required rapid access to transparent information. For general practitioners, reviews and comments by experts helped to put new information in the context of cancer treatment. Oncologists and general practitioners showed significantly different information needs and different ways to access specific information. In order to better integrate general practitioners while simultaneously serving the needs of oncologists, a database that is up to date, rapidly accessible and does not incur high costs would be helpful.     

Posttraumatic stress disorder among parents of children on cancer treatment: a longitudinal study

The main aim of this study was to investigate the occurrence of cancer-related posttraumatic stress disorder (PTSD) among parents of children on cancer treatment. A longitudinal design with assessments at one week (T1), two (T2), and four (T3) months after the child's diagnosis was used. Two hundred and fourteen parents (107 mothers, 107 fathers) participated at T1-T3. The PTSD Checklist Civilian (PCL-C), a self-report screening instrument for PTSD, was answered by parents over the telephone. According to the PCL-C symptom criteria method 33%, more mothers than fathers, score as potential cases of acute stress disorder (ASD) at T1, whereas 28% as potential cases of PTSD at T2 and 22% at T3. The levels of acute- and posttraumatic stress symptoms show a linear, descending pattern, and mothers report higher levels than fathers. Half of the parents who score as potential cases of ASD a week after the child's diagnosis score as potential cases of PTSD four months later. The findings illustrate that a group of parents of children with cancer experience serious psychological distress related to their child's disease. A traumatic stress perspective on childhood cancer should be applied to paediatric oncology care and appropriate psychosocial interventions should be offered to parents when needed.     

Optimism and psychological well-being among parents of children with cancer: an exploratory study

Aims: To identify the characteristics of optimistic parents of children with cancer. To examine the relationship between optimism, anxiety, depression, life satisfaction, coping and subjective health perception in parents of children with cancer and parents of healthy children. Methods: One hundred parents of children with cancer were recruited during attendance at Oncology Out‐patient Clinics at a UK Regional Cancer Centre. A comparison group of 117 parents of healthy children was also recruited. All parents completed a questionnaire, providing demographic and medical information relating to the child, dispositional optimism, psychological distress, life satisfaction, coping and subjective health perception. Results: Parents of children with cancer had higher levels of anxiety, depression, optimism, satisfaction with life and subjective health perception than the comparison group. Optimism was significantly correlated with satisfaction with life, subjective health perception, anxiety and depression in both groups. Conclusion: The findings highlight the importance of optimism in relationship to psychological distress in parents of children with cancer. Interventions targeting parents' optimism are recommended as a potential source of coping with adversity within this population. Copyright © 2007 John Wiley & Sons, Ltd.