Turning to art as a positive way of living with cancer: A qualitative study of personal motives and contextual influences

Why do some women turn to creative art-making after a diagnosis of cancer? Eleven women provided qualitative accounts that were analysed following guidelines for interpretative phenomenological analysis (IPA). Some described taking up artistic leisure activities initially in order to manage emotional distress. Others emphasized their need for positive well-being, taking up art to experience achievement and satisfaction, to regain a positive identity, and to normalize family dynamics in the context of living with cancer. Participants’ turn to art-making was facilitated by biographical and contextual factors, including pre-existing craft skills, long-standing personal values and coping philosophies, family role models for managing adversity, and the supportive encouragement of family and friends. Other research has acknowledged that positive lifestyle change and posttraumatic growth can occur after a cancer diagnosis, and this study reveals a multi-faceted process. The findings suggest a need for further research into the experiences that facilitate positive lifestyle change and subjective well-being among people who are living with cancer.     

The meaning of home for Karen and Chin refugees from Burma: An interpretative phenomenological approach

Loss of home is common to all people from a refugee background yet we have little understanding of the diversity of meaning associated with this important concept. A phenomenological approach was used to explore experiences of home amongst Karen and Chin refugees residing in Brisbane. In-depth, semi-structured interviews were conducted with nine participants from Karen and Chin backgrounds. The participants comprised five females and four males (mean age 40 years, median length of time in Australia 1.33 years). Participants described their migration stories, including pre- and post-migration history. Analysis was conducted using interpretative phenomenological analysis. Three superordinate themes, explicating the meaning of home for participants, were identified: home as the experience of a psychological space of safety and retreat; home as the socio-emotional space of relatedness to family; and home as geographical-emotional landscape. Loss of home was experienced as a multidimensional loss associated with emotional and physical disturbances. These findings, based upon a phenomenological paradigm, enhance understanding of the experience of being a refugee and of the suffering engendered by loss of home. They open up the possibility for conceptualizing refugee responses in terms of human suffering and meaning making.     

Exploring the transitional process from receiving a diagnosis to living with motor neurone disease

Motor neurone disease (MND) is a rapidly progressing neurodegenerative condition that results in a marked reduction in life expectancy. Currently, little is known about the experiences of people after they have received this diagnosis and the effect of this on their sense of self and identity. In this study, interpretative phenomenological analysis was used to explore both the personal and lived experiences of people with MND. Seven people diagnosed with MND within the previous six months were recruited. The three themes constructed from the participants’ accounts were ‘Then they dropped the bomb shell’; Receiving a diagnosis of MND; ‘Getting on with it’; Learning to live with MND; and ‘A lot of normal life is lost’; Experiencing progressive loss. Participants described receiving a diagnosis as a devastating experience but most participants were able to accept their diagnosis and employ adaptive strategies to cope with increasing levels of functional decline. However, in spite of this, the participants experienced functional changes that affected their identity, social status and social relationships.     

“Putting One Foot in Front of the Other”: A Qualitative Study of Emotional Experiences and Help-Seeking in Women with Multiple Sclerosis

Treatments for depression and anxiety in multiple sclerosis (MS) are effective but evidence suggests that individuals do not always seek help for emotional difficulties. This study explored how ten women with MS (aged 30–64), recruited via a hospital based MS clinic, coped with and understood their emotions. The semi-structured interviews were analysed using interpretative phenomenological analysis. Eight participants discussed the analytic process and themes. Four overarching themes emerged: Disclosure stress, Uncomfortable dependence, Facing deterioration and One step at a time. The women struggled emotionally with many aspects of living with MS yet coping alone provided a way of defying MS and maintaining independence and control. The women needed emotional support but reported thinking others either did not notice or understand; their emotions often felt invisible. More holistic care from services was desired. Non help-seeking for distress was partially influenced by a desire to keep things “normal” and a lack of knowledge regarding service provision.     

The Meaning and Impact of Head and Neck Cancer: An Interpretative Phenomenological and Repertory Grid Analysis

This study explores the personal meaning of head and neck cancer for individuals, with particular reference to the impact on the self. It employs interpretative phenomenological and repertory grid analysis with 10 people, all of whom have undergone surgical treatment for head and ceck cancer. Four themes emerged: namely, destruction of self, altered relations with the body, disenfranchised self, and conservation of self. Repertory grid analysis validated and enriched understanding of these findings. Participants described how head and neck cancer inflicted a fundamental attack on their sense of self. Nonetheless, participants were dynamic in their self-management and detailed an active process to retain a positive sense of self.     

Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome

Individual in-depth interviews with 14 people with chronic fatigue syndrome (CFS) were conducted, focusing on the experience of living with CFS. The interviews were transcribed verbatim and were analysed for recurrent themes using interpretative phenomenological analysis (IPA). Here we present two inter-related themes: “Negotiating a diagnosis” and “Negotiating CFS with loved ones”. Participants reported delay, negotiation and debate over diagnosis: further, they perceived their GPs to be sceptical, disrespectful and to be lacking in knowledge and interpersonal skills. However, participants found delegitimising encounters with their partners more difficult to deal with. Participants viewed such delegitimation as a form of personal rejection; they were hurt by their loved ones’ reactions and subsequently pondered the price of love, respect and friendship. The findings are discussed in relation to extant literature, and recommendations for future research are suggested.     

Social Comparisons,Social Support,and Self-Perceptions in Group Exercise for People With Parkinson's Disease

People with Parkinson's disease (PD) may experience declining function and limited interaction with others with PD. Group exercise provides opportunities for physical accomplishment and social support, as well as potential social challenges. We used interpretative phenomenological analysis to examine experiences of social comparison, social support, and self-perceptions of 20 people with PD in group exercise. Participants experienced (a) reticence evolving to inspiration, (b) anxiety relief through camaraderie and breaking taboos, and (c) maintaining athletic identity through participating and helping others. Practical implications include facilitating a safe space and support to alleviate anxiety and sustain participation.     

Creating Trust among the Distrustful: A Phenomenological Examination of Supportive Services for Former Sex Workers

A phenomenological exploration was conducted into the lived experiences of 13 voluntary sex workers receiving supportive services in a major city in the southwestern United States. The study explored how participants viewed the services they received after exiting the sex industry, as well as experiences of coercion throughout their lives. Data analysis revealed, unexpectedly, that constructs of trust emerged. Respondents provided insight into how trust is learned throughout their lives and how coercion is often used by those around them to inspire trust before and during life in the sex industry. Participants also articulated how trust can be relearned, replacing coercion, while receiving supportive services after exiting the industry. Results from this study reveal processes by which sex workers learn to trust others by connecting through common experiences shared with other sex workers, modeling staff demonstrations of trust with other staff and clients, and being held accountable by others to their desires. The author offers implications for future research and practice areas.     

Difficulties adjusting to post-discharge life following a spinal cord injury: an interpretative phenomenological analysis

Individual semi-structured interviews were conducted with 17 individuals who had experienced a traumatic spinal cord injury (SCI), focusing on the participants' lived experience of SCI. The interviews were transcribed verbatim and were analysed for recurrent themes using interpretative phenomenological analysis (IPA). Here, we present three inter-related recurrent themes all concerning difficulties in adjusting to home life following hospital discharge: "loss of camaraderie", "lack of post-discharge care" and "other people's reactions to spinal cord injury". Participants reported that the camaraderie they formed with fellow patients during their rehabilitative stay in hospital generated feelings of security and community. This was discussed in stark contrast to the isolation and loneliness that they subsequently experienced post-hospital discharge. A perceived lack of physical, practical and psychological support coupled with negative and stigmatising reactions of the wider community served to make adjustment to home life post-SCI particularly difficult for the participants. The findings are discussed in relation to extant SCI literature, and recommendations for future health care of individuals with SCI are made.     

Waiting for a kidney from a deceased donor: an interpretative phenomenological analysis

Demand for kidneys from deceased donors far outstrips supply. Despite this, there appears to be little research that focuses solely on the experience of waiting for a kidney from a deceased donor. This study uses the qualitative methodology interpretative phenomenological analysis to explore the lives of 10 people on the transplant list, with the aims of illuminating the potential psychological challenges those on the list may face during this time, and providing information to help clinicians more fully support such people in the future. Two themes connected to the experience of waiting – adjustment to the uncertainty of waiting and thinking about receiving a kidney from a living donor – are presented here. Participants describe a sense of confusion and uncertainty around life on the list, and discuss their strategies for dealing with this. Novel complexities around the ambiguous challenge of receiving an organ from a deceased donor are revealed. It is recommended that health care teams provide a forum for this patient group to work through these feelings of confusion and ambiguity.     

'It's like there are two people in my head': a phenomenological exploration of anorexia nervosa and its relationship to the self

This study explores the lived experience of anorexia nervosa from the perspective of those who use pro-recovery websites for eating disorders. Fourteen people participated in an online focus group or an e-interview. Data were analysed using interpretative phenomenological analysis. Participants described their disorder as a functional tool for avoiding and coping with negative emotions, changing their identity and obtaining control. A central theme was the experience of an 'anorexic voice' with both demonic and friendly qualities. This voice felt like an external entity that criticised individuals and sometimes dominated their sense of self, particularly as anorexia nervosa got worse. Applying dialogical theory suggests a new model of anorexia nervosa, where the anorexic voice is a self-critical position, which disagrees with and attempts to dominate the more rational self. It is suggested that to move on from anorexia nervosa, the individual needs to address his/her anorexic voice and develop a new dominant position that accepts and values his/her sense of self.     

‘It's like there are two people in my head’: A phenomenological exploration of anorexia nervosa and its relationship to the self

This study explores the lived experience of anorexia nervosa from the perspective of those who use pro-recovery websites for eating disorders. Fourteen people participated in an online focus group or an e-interview. Data were analysed using interpretative phenomenological analysis. Participants described their disorder as a functional tool for avoiding and coping with negative emotions, changing their identity and obtaining control. A central theme was the experience of an ‘anorexic voice’ with both demonic and friendly qualities. This voice felt like an external entity that criticised individuals and sometimes dominated their sense of self, particularly as anorexia nervosa got worse. Applying dialogical theory suggests a new model of anorexia nervosa, where the anorexic voice is a self-critical position, which disagrees with and attempts to dominate the more rational self. It is suggested that to move on from anorexia nervosa, the individual needs to address his/her anorexic voice and develop a new dominant position that accepts and values his/her sense of self.     

“Yeah that Made a Big Difference!”: The Importance of the Relationship between Health Professionals and Fathers Who Have a Child with Down Syndrome

Evidence suggests that medical services do not reflect the increased involvement of fathers in childcare, a discrepancy that can often lead to feelings of exclusion and inequality. Fathers who have a child with Down syndrome may encounter many different health professionals during their child’s life, therefore it is important to consider this relationship, and investigate the factors that influence their experiences. This is particularly important because the limited research focusing on fathers suggest that those who have a child with Down syndrome can experience increased stress levels and lasting feelings of loss and grief. It is therefore important to address their relationships with health professionals, as these may be a significant resource to prevent these feelings. This study used interpretative phenomenological analysis (IPA) to explore the experiences of seven fathers who have a child with Down syndrome, focusing on their interactions with health professionals. The analysis showed that the major factors associated with negative experiences were feelings of exclusion, receiving overly negative information about the condition and a perceived lack of on-going support. Positive experiences were associated with being made to feel like an equal parent, being given direct/clear information and being congratulated on the birth of their child. These results provide an insight into what fathers expect in terms of their own and their child’s care and highlight that health professionals have an important and extensive role in influencing fathers’ experiences of Down syndrome.     

The nature of quality of life in residential care facilities: the case of White older South Africans

This study describes the nature of quality of life (QoL) from the perspective of older South Africans (n?=?41) in residential care facilities (female =?75%; age range 62–95 years). The residents participated in individual in-depth interviews and focus groups. They also set down their narrative reflections on their QoL in journals. Data were analysed by means of interpretative phenomenological analysis. Findings reveal the resident older South Africans regard QoL as a spiritually informed worldview of life events, coping with challenges and being mindful of others. The residents perceived QoL to include proximity and quality and reciprocity with others. QoL among older people is context and people specific.     

Social support for women with chronic pelvic pain: what is helpful from whom?

Eight women with Chronic Pelvic Pain (CPP) were asked, by means of semi-structured interview, what had been helpful and unhelpful in terms of social support from their partners, families, friends, acquaintances, doctors, nurses and other women with CPP. Firstly, thematic analysis employing a pre-defined social support category system revealed that particular forms of tangible support were preferred from specific support providers but emotional and informational support was appreciated from the whole support network. Secondly, interpretative phenomenological analysis revealed three major additional themes: ‘Pain and Suffering’ described the trauma suffered by these patients and the anger and anxiety surrounding their experience; ‘Ideal Social Support’ revealed a picture of desired support consisting of enduring emotional and practical support which did not undermine individual autonomy; ‘Shortfalls in Social Support’ had subsidiary themes entitled ‘Lack of empathy’ and ‘Lack of engagement’. These themes were described and discussed in relation to each other, extant research and their clinical implications.     

Caring and connectedness in the context of domestic worker employment in South Africa

This study investigated workplace relational connectedness qualities in terms of domestic worker employment in a South African setting. Twenty black female domestic workers were recruited through purposive respondent-driven self-sampling. Participants ranged in age from 27 to 59 years. Semi-structured in-depth interviews were used to generate the data. An interpretative phenomenological approach was used to foreground the thematic data analysis. Caring and connectedness emerged as the main theme that characterised participants’ positive employment relationships. Identified sub-themes related to participants’ experience of their employment context, work engagement and treatment, psychosocial well-being and communication. The findings are consistent with the broaden-and-build theory which proposes a positive behavioural cycle which results from reciprocal actions.     

The Coping Mechanisms and Strategies of Hypertension Patients in Ghana: The Role of Religious Faith,Beliefs and Practices

This qualitative study explored the role of religious faith, belief and practice systems in the coping mechanisms and strategies of essential hypertension patients in Accra, Ghana. Six participants were recruited for participation, of which five were Christians and one was a Muslim. Interviews were conducted and interpretative phenomenological analysis was used to analyze the data. Results showed that participants used their religious faith, beliefs and practices as coping resources. Participants used a deferring-collaborative style of religious coping, which seemed to have provided them with an avoidance strategy that protected the participants from conscious confrontation with their illness. Religious faith and beliefs also afforded the participants a sense of coherence that enabled the participants to manage their stress, reflect on their external and internal resources to promote effective coping and adaptive functioning in a health promoting manner. Implications of a deferring-collaborative style of religious coping and religious re-appraisal are discussed.     

Health care utilization by low-income clients of a community clinic: an archival study

An archival study was done of 500 medical records from a community clinic serving a low income predominantly Hispanic area of Los Angeles. The data collected included demographic characteristics and presented symptoms or reasons for visit, as well as diagnosis and treatment. The greatest number of patient visits were made for family planning services. A large porportion of the patients who received initial family planning services failed to return to the clinic for follow ups or additional supplies. A total of 208 pregnancy tests were performed in 151 of the 500 cases sampled. Of these, 152 were positive. The most frequently stated reason for requesting pediatric services was for physical exams, accounting for 30% of the visits. It should be noted that the discontinuity of care and insufficient utilization of preventive care seen in these results deserve serious attention by medical clinic administrators. The rate of patients who do not return for family planning after the initial visit is worrisome. A greater effort to attract women to family planning services at the time they request pregnancy verification could reduce the need for abortion of unwanted pregnancy. The data also indicate that changes in the wording of certain questions commonly asked of clients may be needed. This study allowed service providers to obtain important information about their performance, their needs, and the future direction that their services might take. This type of analysis is relatively low in cost and can yield important benefits, espicially if done on a periodical base in a search for policy implications.     

Surviving breast cancer: Women's experiences with their changed bodies

In this study, we explored women's experiences with their bodies following treatment for breast cancer. Eleven women who had been treated for the disease (M_{time since treatment} = 4.45 years) were interviewed. Data were collected and analyzed using interpretative phenomenological analysis (Smith et al., 2009). Four main themes emerged from the data: changing visibly and invisibly; experiencing intense thoughts and emotions; meaning of the body: a vehicle of health, well-being, and social expression; and managing and dealing with physical changes. Overall, the women experienced various physical changes that shaped, mostly in a negative way, their perceptions, thoughts, attitudes, feelings, and beliefs about their bodies. The women described attempts to make positive lifestyle behavior choices (e.g., diet, participate in physical activity), and used other strategies (e.g., wigs, make-up, clothes) to manage their appearances and restore positive body-related experiences. Based on these findings, it is important to be cognizant of women's body image concerns following breast cancer given the poignant and lasting effects they can have on their psychosocial and emotional well-being.