Qualitative Health Research

Social science scholarship on cancer has been almost exclusively focused on Organization for Economic Cooperation and Development (OECD) countries, despite a significant epidemiological transition taking place in many non-OECD contexts, with cancer emerging as a prominent, and strongly feared, illness experience. With cancer gaining an increasingly high profile in India, there is an urgent need to explore how experiences of cancer may be socially and culturally embedded, and in turn, how localized practices may shape the therapeutic encounter. Here, drawing on interviews with 40 people living with cancer in Hyderabad, India, we focus on some specific components of their therapeutic journeys, including diagnostic and prognostic disclosure, collective versus individual decision making, the dynamics of medical authority, and the reception of cancer within their social milieu. These participants’ accounts provide insight into a range of cultural sensibilities around illness and care, and reinforce the importance of understanding the cultural inflections of communication, decisions, and illness experiences.

The purpose of this constructivist grounded theory article is to identify, explore, and theorize the social and psychological processes used by people with Parkinson disease. Analytic procedures generated the five-stage theory of Preserving self of people with Parkinson disease: (a) making sense of symptoms, (b) defining turning points, (c) experiencing identity dilemmas, (d) reconnecting the self, and (e) envisioning a future. Reminders of former selves and capabilities were painful; participants desperately sought normalcy. Participants developed creative methods for maintaining independence but frequently overestimated their abilities and took risks. Participants were 15 men and 10 women (ages 40–95), most of whom lived with their families. Disease status was ascertained through medication logs and two scales: Hoehn and Yahr staging and Activities of Daily Living. Data included 62 in-depth interviews, nonparticipant observation, and participant photos, videos, and related documents. Recommendations were derived from the theory to support processes of Preserving Self as interventions designed to reduce the loss of self and to enhance Preserving self. These recommendations included developing relationships, teaching expected and unexpected feelings and behaviors, and involvement with sensory integrating activities.

Experiences of cancer are enmeshed with cultural understandings and social discourses around responsibility and causation. A cancer diagnosis can raise questions about its causation—including the role of the individual—whereas the disease and its treatment provide various social markers of illness. We present a sociological study of 81 women’s accounts of living with cancer, with a focus on how women interpret their illness, in light of their interpersonal interactions and accounts of social relations. Our analysis reveals women’s experiences of cancer diagnosis and treatment, the varied sociocultural meanings of cancer and the responses it elicits, the presence of moral assessments within everyday interactions, and the implications for the support and care they receive. We argue that the experience of cancer should be seen as intimately interwoven with its social reception and cultural sense-making practices, including normative constructs which promote ideas about (in)justice, responsibilization, and shame.

The objective of this study is to identify patterns (components and processes) of reconstruction of suicide survivors. In-depth interviews were conducted with 50 survivors of suicide in Switzerland. Data were analyzed using ATLAS.ti and according to the Grounded Theory principles. Survivors of suicide face four major challenges: dealing with the impact of suicide, searching for meaning, clarifying responsibility, and finding a personal style of reaction and coping. The various ways in which survivors fare through the specific processes of the challenges result in various patterns of reconstruction: the vulnerability, transformation, commitment, and hard blow. The unique characteristics and dynamics of each of them are highlighted. Health care providers would benefit from an approach based on the dynamics of the various patterns of reconstruction in providing appropriate support to survivors of suicide.

Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled “The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life” was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process. Findings indicated that guilt surrounding transfers escalated during the initial stages of the transfer but was mitigated by achieving what family members deemed as a “good” death when relatives were receiving hospice care. The findings of this interpretative approach provide new insights into family-focused perspectives in care transfers of the dying.

Patients’ low adherence to medical treatment in chronic illnesses is one of the biggest public health problems. Numerous studies attend to the diverse factors associated with patient adherence. However, little research has been done to explore patients’ reasons for non-compliance from their own point of view. In this article, we aim to understand patient non-adherence using dialogical self-theory and qualitative research methods. We interviewed 51 hypertensive patients to explore their anti- and pro-adherence motivations. Results show that most patients adhere and non-adhere to different aspects of treatment programs (medication, exercise, diet) according to the way they construct meaning to those activities. Also, our findings support the notion that patients’ non-adherent behavior aims to preserve important values such as self-esteem, autonomy, affiliation, well-being, freedom, and health (or that more adherence is not worth the extra effort). We discuss the therapeutic relevance of empathically understanding patients’ worldview and implicit beliefs.

Despite increasing prominence, little is known about the cognitive processes underlying shared decision making. To investigate these processes, we conceptualize shared decision making as a form of distributed cognition. We introduce a Decision Space Model to identify physical and social influences on decision making. Using field observations and interviews, we demonstrate that patients and physicians in both acute and chronic care consider these influences when identifying the need for a decision, searching for decision parameters, making actionable decisions Based on the distribution of access to information and actions, we then identify four related patterns: physician dominated; physician-defined, patient-made; patient-defined, physician-made; and patient-dominated decisions. Results suggests that (a) decision making is necessarily distributed between physicians and patients, (b) differential access to information and action over time requires participants to transform a distributed task into a shared decision, and (c) adverse outcomes may result from failures to integrate physician and patient reasoning. Our analysis unifies disparate findings in the medical decision-making literature and has implications for improving care and medical training.

There is insufficient research examining the implementation of complex novel interventions within health care. This may be due to a lack of qualitative research providing subjective insights into these implementation processes. The authors investigate the advantages of applying behavior change theories to conceptualize qualitative data describing the processes of implementation of complex interventions. Breaking Free Online (BFO), a digital treatment intervention for substance misuse, is described as an example of a complex intervention. The authors review previous qualitative research which explored initial diffusion, or spread, of the BFO program, and its subsequent normalization as part of standard treatment for substance misuse within the health and social care charity, “Change, Grow, Live” (CGL). The use of behavior change models to structure qualitative interview findings enabled identification of facilitators and barriers to the use of BFO within CGL. These findings have implications for the development of implementation research in novel health care interventions.

Case study research is a comprehensive method that incorporates multiple sources of data to provide detailed accounts of complex research phenomena in real-life contexts. However, current models of case study research do not particularly distinguish the unique contribution observation data can make. Observation methods have the potential to reach beyond other methods that rely largely or solely on self-report. This article describes the distinctive characteristics of case study observational research, a modified form of Yin’s 2014 model of case study research the authors used in a study exploring interprofessional collaboration in primary care. In this approach, observation data are positioned as the central component of the research design. Case study observational research offers a promising approach for researchers in a wide range of health care settings seeking more complete understandings of complex topics, where contextual influences are of primary concern. Future research is needed to refine and evaluate the approach.

Vociferous, shrill, and piercing—the first cry of the newborn infant signals that a new and separate life has begun. Separated from the body of the mother, the newborn cry serves to call for care, support, and protection. Yet, what is it that is expressed in the first cry? Or is the cry not really a matter of expression at all? In what sense may the cry be meaningful? Although we may be able to explain the function of the cry, we are puzzled by the enigma of its meaning. In this study, the science of the first cry is complemented with its physiognomy and genesis. It asks how the primal inceptuality and elemental sensibility of the first cry may be qualitatively explored and understood on the basis of what we have learned from embryology, neonatology, and related medical research. The phenomenological physiology of the first cry of the newborn challenges us to cautiously speculate on its significance for the health sciences, the adult, and the child.

Concussions are a type of traumatic injury caused by a jolting of the brain that disrupts normal brain function, and multiple concussions can lead to serious long-term health consequences. In this article, we examine the relationship between college students’ understanding of concussions and their willingness to continue playing despite the possibility of sustaining multiple head injuries. We use a mixed-methods approach that includes participant observation, cultural domain analysis, and structured interviews. Our research finds that students hold a robust cognitive understanding of concussion yet discursively frame concussions as skeletomuscular injuries. More importantly, students affirm the importance of playing sports for themselves and others, so their decisions to risk multiple concussions must be understood within cultural and biocultural contexts of meaningful social play. We suggest that peoples’ decision to risk multiple head injuries should be understood as a desire for meaningful social play rather than an uninformed health risk.

The global increase in refugee migration to urban areas creates challenges pertaining to the promotion of refugee health, broadly conceived. Despite considerable attention to trauma and forced migration, there is relatively little focus on how refugees cope with stressful situations, and on the determinants that facilitate and undermine resilience. This article examines how urban Congolese refugees in Kenya promote psychosocial well-being in the context of structural vulnerability. This article is based on interviews (N = 55) and ethnographic participant observation with Congolese refugees over a period of 8 months in Nairobi in 2014. Primary stressors related to scarcity of material resources, political and personal insecurity, and emotional stress. Congolese refugees mitigated stressors by (a) relying on faith in God’s plan and trust in religious community, (b) establishing borrowing networks, and (c) compartmentalizing the past and present. This research has broader implications for the promotion of urban refugees’ psychosocial health and resilience in countries of first asylum.

Lack of awareness among paid carers of the possible late-life consequences of early-life periods of extreme and prolonged traumatization may have negative impacts on the experiences of trauma survivors in receiving care. An interpretive phenomenological approach was used to investigate the lived experience of paid carers in providing care for Jewish Holocaust survivors. In total, 70 carers participated in 10 focus group discussions. Credibility of the findings was ensured by methodological triangulation and peer debriefing. Three major themes emerged: (a) knowing about survivors’ past helps me make sense of who they are, (b) the trauma adds an extra dimension to caregiving, and (c) caring for survivors has an emotional impact. Specific knowledge, attitudes, and skills for building positive care relationships with Holocaust survivors were identified. The findings offer a starting point for advancing knowledge about the care of older survivors from other refugee backgrounds.