Self-management is crucial for people living with chronic diseases, but the actual process of integrating self-management has not been explored in depth. In this article, we investigate the integration of self-management into the lives of people with chronic illness. In this longitudinal study, we used an interpretive description approach. Twenty-one individuals were interviewed regularly during the first 3 years after they were diagnosed with a chronic condition. We found self-management integration to be an ongoing process that included four phases: seeking effective self-management strategies, considering costs and benefits, creating routines and plans of action, and negotiating self-management that fits one's life. The participants managed the phases according to their context, e.g., illness experience, life situation, personal beliefs, and social support. Health care providers should therefore facilitate self-management integration by providing support that is adjusted to the person's phase of self-management integration and life context.
Built on the important functions daily routines serve families and child health, this study aimed to explore parents’ descriptions of mealtimes and food-related challenges when living with a child using a gastrostomy feeding tube. The study was informed by ecocultural theory and based on in-depth interviews combined with stimulated recall. The interviews of 10 parents were inductively analyzed by means of qualitative content analysis. Four main categories comprised the parents’ descriptions: “One situation, different functions,” “On the child’s terms,” “Doing something to me,” and “An unpredictable pattern,” with one overarching theme. The analyses showed that the parents strived to establish mealtimes in line with their cultural context, although they struggled to reach a point of satisfaction. The study highlights the importance of health care professionals to address the medical aspects of caring for a child with a G-tube, but also the potential psychological and social consequences for ordinary family life. © The Author(s) 2021.
Interviews with individuals experiencing homelessness can be challenging for various reasons, including mental and physical health issues, substance use, and negative experiences with authority figures. Researchers have used photos to facilitate communication and empower participants during data collection. We analyzed data from a previous study to explore the use of researcher-generated photos during interviews about health with 13 women experiencing homelessness. Conversation analysis revealed clear patterns regarding the use of the photos during the interviews. The photos were referred to 118 times over the total interview length, 6 hours and 23 minutes, with the interviewer making 62% of the referrals and the women accounting for 38%. Fifty-nine percent of the referrals occurred within the first 5 minutes of the interviews. The women used the photos to trigger associations and emotions, to describe photo content, or in a minor role during the interview. Interpretations from an advisory board of six women with lived experiences of homelessness suggested that the photos did not engage participants as intended, highlighting the importance of considering participants’ perspectives when designing photo-elicitation methods. The feedback also provided valuable insights into interview locations and incentives in research that may have influenced the women’s willingness to use the photos. This study emphasizes the importance of understanding the complexity of choosing researcher-generated photos in interviews with underserved, hard-to-reach populations.
We used interpretive description to describe how everyday life close to death was experienced and dealt with in families with one member who had a life-threatening illness. We performed 28 individual, couple, and group interviews with five families. We found two patterns, namely, “being me in a family living close to death” and “being us in a family living close to death.” “Being me” meant that everyone in the family individually had to deal with the impending death, regardless of whether he or she was the person with the life-threatening illness or not. This was linked to ways of promoting the own self-image, of “me-ness.” This pattern was present at the same time as the pattern of “being us,” in other words, being a family, and dealing with impending death and a new “we-ness,” as a group. “Striving for the optimal way of living close to death” was the core theme.
Photovoice has gained acceptance as a viable visual method to engage community members as partners in research. However, as methods associated with photovoice have developed and evolved over time, concerns have also been raised with regard to how this impacts the methodological underpinnings on which photovoice rests. The aim of this article is to explore the meaning of dialogue and action as methodologically pivotal for the relevance of photovoice as community-based participatory research; further, using an empirical case and narrative theory, we attempt to contribute to an understanding of the processes that facilitate the viability and relevance of photovoice. By unpacking the contributions of dialogue and action towards a participatory methodology, in this case photovoice, the authors illustrate and argue for aspects critical in photovoice. Drawing on these aspects provides an arena for storytelling and story making, which have not previously had an explicit part in photovoice.
The purpose of this study was to gain in-depth understanding of what it is like for a person with irritable bowel syndrome to be in the patient position in encounters with health care providers. We conducted qualitative interviews with nine individuals. Our analysis, guided by interpretive description, revealed experiences of unsupportive and supportive encounters. Unsupportive encounters were shaped by humiliation, insignificance, and abandonment. Not feeling believed and acknowledged as persons made the participants lose trust in their own experience, which enhanced their unfamiliar mood of being in the world. Supportive encounters were less prominent. These were characterized by openness and acknowledgment of the patient's lifeworld. Feeling significant and being listened to promoted feelings of being in a partnered, cocreating relationship. It is reasonable to assume that care originating in the patient's lifeworld would support the patients to use their strength to manage illness and regain familiarity in everyday life.
Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person’s health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions.
The purpose of this study was to obtain and describe in-depth knowledge about family carers' experiences of the encounter, in a hospital, between informal and professional care at the end of life. A hermeneutic approach was chosen, and we conducted interviews with 27 family carers 6 to 8 months after their loved one's death. In the encounter, the family carers made their own assessment of their loved one's condition and situation. The professionals' attitudes could both promote and impede the interaction between the two forms of care. Family carers' care actions were characterized by struggling to get treatment, being left behind, being partners, keeping the illness at a distance, hovering beside their loved one, waiting for death, and being experts and protectors. The main interpretation of the findings is that family carers possess practical knowledge about what care is the best, or least harmful, for their loved one. This can be linked to what Aristotle called phronesis.
Fibromyalgia (FM) is a common chronic pain syndrome that mostly affects middle-aged women. Our aim with this study was to elucidate meanings of being received and met by others as experienced by women with FM. Interviews with a narrative approach were conducted with 9 women. We analyzed the transcribed interviews with a phenomenological hermeneutical interpretation. The findings revealed two themes: being seen as a malingerer and being acknowledged. Meanings of being received and met by others, as experienced by women with FM, can be understood as a movement between the two perspectives. When they were acknowledged, their feelings of security and trust increased, but the women could not rely on this because others received and met them in such an unpredictable manner.
Women with recurrent breast cancer face many difficulties and challenges, from clinical symptoms of disease progression and treatment to a range of emotional responses. Guided by grounded theory methodology, we explored the main concerns of women with recurrent breast cancer, and how they were dealing with their situations. Data were collected from 40 in-depth interviews with 20 women diagnosed with recurrent breast cancer. The core category illustrated the process of “making sense of living under the shadow of death,” and was based on the women's experiences of adjusting to living with a persistent life-threatening illness. Confronting a recurrence of breast cancer was a life-altering event. Moving through a difficult and challenging time, women eased their distress by letting go of losses and reassessing important values. Through a personal transition women transcended living with a life-threatening illness. These findings emphasize the importance of recognizing existential distress in clinical practice.
In this article the authors describe a study focusing on middle-aged persons living with chronic heart failure (CHF), a group with which few studies have been conducted. They used the lifeworld perspective to focus on persons' lived experiences of the phenomenon, that is, living with moderate-severe CHF as a middle-aged person. They interviewed 7 middle-aged persons (4 men, 3 women; aged 38 to 65 years) and analyzed the data obtained using a phenomenological approach. The phenomenon's essence is described as a life situation characterized by a failing body, a life constantly under threat, a rapidly changing health condition, and an altered self-image, which implies that the persons live in a changed life situation. The essence was further illuminated by three meaning constituents: an ambiguity of the body, losing track of life, and balancing life. Knowledge from this study will help caregivers understand and support patients with this debilitating condition.
The aim of this study was to illuminate the meaning of inner strength when very old as narrated by women and men 85 and 90 years old. The authors used a phenomenological hermeneutical method to analyze interviews from 11 women and 7 men, aged either 85 or 90, who scored high on scales measuring phenomena related to inner strength. The following themes emerged from the analysis: feeling competent in oneself yet having faith in others, looking on the bright side of life without hiding from the dark, feeling eased and also being active, being the same yet growing into a new garment, and living in a connected present but also in the past and the future. The authors understood the meaning as Life Goes On--Living It All. To illuminate this meaning further, the authors related the findings to the Aristotelian virtues and the golden mean, and to developmental theory.
In research concerning multiple sclerosis (MS), the factors that impact on people's well-being and quality of life have been studied, but little has been written about what it means to feel well for women with MS. Therefore, in this study our aim was to describe meanings of feeling well for women with MS. We interviewed 15 women with MS, and a phenomenological hermeneutic interpretation was utilized to analyze the interviews. Through this study it can be understood that finding a pace where daily life goes on means that women with MS feel well when the illness is kept in check and is not the dominant experience. The findings of this study can be used to confirm women's experiences of feeling well, despite living with the consequences of MS. Health care professionals will find the results of this study useful when they reflect on and formulate the care of women with MS when attempting to support the latter's desire to feel well in their daily lives.
The existing knowledge of women’s experiences of living with Parkinson’s disease and fatigue is limited. To gain first-hand knowledge, we interviewed 11 women using a phenomenological hermeneutic interpretation. The results indicate that the familiar daily routines of women with Parkinson’s disease had changed in the sense that their bodily attachment to the world had been altered. The body no longer provided smooth access to the surrounding world; rather, the body served as a barrier to daily living. In practice, understanding this barrier can be significant in recognizing how to create positive conditions that support the women’s experiences and how to formulate their care in congruence with their needs.
As researchers in palliative care, we recognize how involvement with seriously ill and dying persons has an impact on us. Using one's own senses, emotional and bodily responses in observations might open intersubjective dimensions of the research topic. The aim of the article is to highlight how phenomenological theories on intersubjectivity can be useful to develop rich and transparent data generation and analysis. We present three field note examples from observation in a hospice ward, which illuminate how researcher awareness of aspects of intersubjectivity can add valuable insights to data and analysis. Out of the examples, we elaborate on three arguments: (a) how the researcher's lived experience of time and space during fieldwork triggers new research questions, (b) how observations as an embodied activity can bring new insights and open new layers of meaning, and (c) the value of observations in gaining insight into relational aspects in a hospice.