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By 2025, over eight million UK households will be receiving Universal Credit (UC). Introduced in 2013 to simplify the benefit system and improve work incentives for working age adults, UC has been criticised for causing hardship and exacerbating inequalities. There is limited research on children and young people’s (CYP) views of UC, as well as its health and social impacts. In this pilot qualitative study, creative methods were used to understand the views of UC among CYP (n = 40) aged 12–16 years in North East England. Findings showed diverse and nuanced understanding of UC as well as contested views about conditionality, sanctions, lower UC rates for under-25s and the two-child limit alongside recognition of the stigma and shame associated with benefits. While CYP value paid employment, they stressed the importance of minimum income standards and tailored employment support for UC claimants, taking account of their personal, health and family circumstances. Findings suggest CYP are aware when parents and carers are struggling financially and may try to ease pressures on parents. Debates about principles of equality, fairness, social justice and deservingness were present in young people’s accounts. We conclude by exploring future directions for a CYP-centred approach to social policy.
Cognitive behavioural therapy (CBT) is one of the best-evidenced psychosocial interventions for psychosis and is recommended by the National Institute for Health and Care Excellence and the American Psychiatric Association. CBT was developed and derived from Western cultural values, which may not be appropriate for non-Western cultures. Trials of CBT in Western countries have indicated that participants from ethnic minority groups demonstrate low rates of engagement, retention, and recruitment. This indicates that the principles underlying CBT may conflict with individual beliefs and cultural values in non-Western countries. Therefore, we interviewed 15 people diagnosed with schizophrenia and 15 with their family members to explore the beliefs and attitudes of people diagnosed with schizophrenia and their family members concerning the proposed CBT intervention for psychosis in the Saudi context. The findings revealed that most participants accepted the proposed intervention. Important factors that influenced participants’ engagement and motivation in the CBT intervention were related to the therapist’s qualities (sex, empathy, and competence), family involvement, religion, and the number and format of CBT sessions for psychosis.
Key learning aims
(1) To explore the beliefs and attitudes of people diagnosed with schizophrenia concerning the proposed CBT intervention for psychosis and how to improve it to make it more appropriate for their needs and cultures.
(2) To explore the beliefs and attitudes of family members of people diagnosed with schizophrenia concerning the proposed CBT intervention for psychosis and how to improve it to make it more appropriate to their needs and culture.
Despite significant advancements in the development of psychotropic medications, increasing adherence rates remain a challenge in the treatment and management of psychiatric disorders. The purpose of this study is to qualitatively explore the challenges underlying medication adherence and strategies to improve it among adolescents with psychiatric disorders in Malaysia. This qualitative research design presents results from 17 semi-structured interviews with adolescent psychiatric patients, aged 11 to 19 years old, from public hospitals across Peninsular Malaysia. The data collected from interviews were transcribed and processed through thematic analysis using the NVivo 11 software. A total of three main themes concerning medication adherence were identified: (1) challenges; (2) coping strategies and (3) protective factors. In this study, thirteen subthemes emerge as challenges underlying medication adherence experienced by adolescent psychiatric patients. The coping strategies identified in this study fall under three broad subthemes which are problem-focused strategies, emotion-focused strategies and maladaptive strategies. This study also highlights social support and positive medicinal effects as protective factors for non-adherence issues in adolescent psychiatric patients. In conclusion, this study supports the notion that adherence is a multi-factorial phenomenon. This study can inform future development of interventions and targeted health promotion programmes in enhancing adherence.
Patients with progressive neurologic illness still lack access to quality palliative care services. Barriers to the comprehensive provision of neuropalliative care include gaps in palliative care education. To address this barrier, a novel international model of neuropalliative care education e-learning program was launched in 2022.
Methods
This is a qualitative study on the self-reported learning outcomes and educational gains of participants of a neuropalliative care e-learning course.
Results
Thematic analysis shows changes in the participants’ perceptions of neuropalliative care and several specific educational gains. After attending the course, participants recognized neuropalliative care as a multiprofessional and interdisciplinary effort requiring more than medical knowledge and disease-specific treatment skills. They gained understanding of the complexity of prognosis in neurological diseases, as well as ethical concepts as the basis to approach difficult decisions. Valuing the needs of patients and caregivers, as well as honest and open communication were recognized as key components of the caring process. In particular, providing emotional support and building relationships to enhance the spiritual component of care were avidly discussed as essential nonmedical treatment options.
Significance of results
E-learning courses are helping to close the gaps in healthcare professionals’ knowledge and skills about neuropalliative care.
Diagnosis of amyotrophic lateral sclerosis (ALS) takes more than 1year from detection of first symptoms. The paper seeks to understand the ALS diagnostic process and adjustment from the perspective of informal caregivers.
Methods
The data stems from an interview study with 9 current and 13 bereaved informal caregivers of people with ALS in Switzerland. The interviews were analyzed using thematic analysis.
Results
We identified 3 key themes pertaining to ALS diagnosis. In the first theme, we present the close involvement of informal caregivers in the “diagnosis journey.” Highlighted within this theme is the important role they play, which ultimately leads to diagnosis of ALS avoiding further delays. Second, we relay their perceptions on “diagnosis communication pitfalls” where they underlined empathy and planning from the part of medical professional, while communicating the terminal diagnosis of ALS. Participants’ reactions and adjustments post-ALS diagnosis are described in “the aftermath of diagnosis.” In this third theme, we highlight participants’ shock and their need to rethink overall life plans and roles in their family.
Significance of the results
Diagnosis communication that is clear, empathetic, and adjusted to the needs of the patients as well as their caregivers is critical. More work is needed to improve diagnosis communication for ALS patients. Receiving the diagnosis of ALS leads to complete changes in life of caregivers. It is therefore necessary that medical professionals provide adequate support that allows them to plan for their future.
Sexual unwellness (SU) has been linked to a lack of sexual satisfaction and to an incapacity to maintain sexual relations.
Objectives
The objective of this cross-cultural study is to shed light on older adults’ perspectives on SU across cultures.
Methods
Eighty-three older participants (65 to 98 years of age) took part in this qualitative study. Participants lived in the community and were of two different nationalities (Portuguese and Mexican). Semi-structured interviews were conducted, and content analysis was then carried out.
Results
SU emerged in the findings of the content analysis through six themes: Dissatisfying Sexual Experiences; Feelings of Isolation; Spirituality; Medication; Unattractiveness and Pain. The most common theme among older Portuguese participants was ‘Dissatisfying Sexual Experiences’ (25.5%). ‘Feelings of Isolation’ was most common among older Mexican participants (13.7%).
Conclusions
A diversity of experiences of older adults in relation to SU was highlighted in this study. Moreover, cross-cultural research on the construct of SU is essential for understanding the cultural differences in the conceptualization of the construct and how these themes may influence the quality of sexual life in old age.
The apparently contradictory co-existence of high levels of gender equality and intimate partner violence against women (IPVAW) found in Nordic countries has been termed the Nordic Paradox. The aim of this study was to examine how the Nordic Paradox is discussed and explained by Spanish professionals working in the IPVAW field. Five focus groups (n = 19) and interviews with key informants (n = 10) were conducted. Four main categories of possible explanations for the Nordic Paradox were identified: Macro-micro disconnect (i.e., discordance between individual beliefs and behaviors and macro-social norms of gender equality), IPVAW as multicausal (i.e., IPVAW defined as a multicausal phenomenon that does not necessarily have to be associated with gender equality), cultural patterns of social relationships (i.e., the role of social relationships and the way people relate to each other in the Nordic countries), and backlash effect (i.e., men’s reaction to greater equality for women). Although this study does not provide a final explanation for the Nordic paradox, its results provide us with a better understanding of the phenomenon and can help to advance research in this field.
Existential guilt is a deep and multidimensional concept that is correlated with concepts, such as in/authenticity, existential anxiety, decisiveness, and personal and social responsibility. The aim of the present study is to investigate the experience of existential guilt among cancer patients.
Methods
The present research was conducted with a qualitative method with a content analysis design. A purposeful sampling method was used to select the participants and the sampling procedure went on until we reached data saturation. Data were obtained using semi-structured interviews with the participants.
Results
From a total of 18 interviews, 94 codes related to existential guilt were obtained. After the analysis, three main concepts were extracted: (1) incompleteness, (2) passivity, and (3) feelings of harm to self and others. Each of these had a number of subcategories.
Significance of results
The participants of the present research were found to experience existential guilt in different ways. The research showed that it is necessary to find the sources of existential guilt in order that effective therapeutic attention can be given cancer patients.
Edited by
Fiona Kelly, La Trobe University, Victoria,Deborah Dempsey, Swinburne University of Technology, Victoria,Adrienne Byrt, Swinburne University of Technology, Victoria
The experience of families who resort to donor sperm conception has been rather well documented. However, how this experience unfolds in the context of insemination fraud is for the most part still unknown. The focus so far has been on the ethical principles this fraud violates and the reasons why it has not been criminally charged. This chapter presents the results of an exploratory qualitative study carried out with 13 Canadian participants who were victims of insemination fraud. With a focus on the experience of the discovery of the insemination fraud by parents and donor-conceived offspring, this chapter discusses the trajectory of this discovery, the emotions associated with it, and its disclosure to minor children. Although the experience varies according to the nature of the fraud, and the circumstances of its discovery, common patterns can be observed: shock, sideration and disbelief, feelings of being betrayed by the medical institution.
Aboriginal Elders in Australia are recognised as having an important role as community leaders and cultural knowledge holders. However, the effects of colonisation and institutional racism mean Elders also experience significant social and economic disadvantage and poor health outcomes. There has been a systemic lack of attention to the worldviews and priorities of Aboriginal people as they age. In this article, we detail the findings of a qualitative study using a localised Aboriginal Elder-informed methodology that involved interviews and focus groups with 22 Aboriginal Elders in the remote town of Walgett on what ageing well means to them. This study was undertaken as part of a long-term partnership between a unique community-controlled Elders organisation and a university. The findings illuminate the barriers and enablers to ageing well for Aboriginal people in Walgett and elsewhere, and demonstrate the value to research, policy and service delivery of listening to and learning from Elders, centring Indigenous knowledges and worldviews, and bringing a more holistic conceptualisation of wellbeing to the understanding of what it means to age well.
To examine the thematic features of dignity therapy generativity documents of advanced cancer patients receiving chemotherapy in mainland China from the perspective of meaning-making during dignity therapy.
Methods
This is a qualitative descriptive study. Content analysis was used to analyze 24 dignity therapy generativity documents derived from a quasi-experimental trial of dignity therapy for advanced cancer patients receiving chemotherapy in a daycare center at a cancer hospital in northern China.
Results
Among the 24 advanced cancer patients whose generativity documents were analyzed, 14 were male and ranged in age from 26 to 78 years (average = 50.3). Two dimensions emerged from the data: (1) the sources of meaning in life, which consisted of social relationships, things and circumstances providing meaning in life, and (2) the ultimate meaning in life, referring to finding one’s real self and realizing the purpose in life, including personal life goals, dignity and autonomy, and morality of patients.
Significance of results
The multidimensional constructs of meaning in life with distinctive traditional Chinese cultural characteristics could provide insights into dignity-conserving care for advanced cancer patients with Chinese culture and provide evidence for refining the implementation protocol of DT through intentionally addressing the ultimate meaning of patients in the therapeutic session.
This study aims to provide an in-depth understanding of the content and process of decision-making about palliative sedation for existential suffering (PS-ES) as perceived by Belgian palliative care physicians.
Methods
This Belgian nationwide qualitative study follows a grounded theory approach. We conducted semistructured interviews with 25 palliative care physicians working in 19 Belgian hospital-based palliative care units and 4 stand-alone hospices. We analyzed the data using the Qualitative Analysis Guide of Leuven, and we followed the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ).
Results
Analysis of the data identified several criteria that physicians apply in their decision-making about PS-ES, namely, the importance of the patient’s demand, PS-ES as a last resort option after all alternatives have been applied, the condition of unbearable suffering combined with other kinds of suffering, and the condition of being in a terminal stage. Regarding the process of decision-making itself, physicians refer to the need for multidisciplinary perspectives supported by an interpretative dialogue with the patient and all other stakeholders. The decision-making process involves a specific temporality and physicians’ inner conviction about the need of PS-ES.
Significance of results
Belgian palliative care physicians are not sure about the criteria regarding decision-making in PS-ES. To deal with complex existential suffering in end-of-life situations, they stress the importance of participation by all stakeholders (patient, relatives, palliative care team, other physicians, nurses, social workers, physiotherapists, occupational therapists, chaplains, etc.) in the decision-making process to prevent inadequate decisions being made.
Underutilisation of school counselling services was prevalent prior to the COVID-19 pandemic. Using the theory of planned behaviour (TPB) as a framework, this qualitative study seeks to elicit salient beliefs towards help-seeking from a school counsellor in secondary school contexts. Through focus-group discussions and individual interviews, 29 students from 10 secondary schools were interviewed. Constructive content analysis was utilised to identify specific salient behavioural beliefs, salient normative norms and salient control belief. The salient beliefs identified include perceiving counselling as a form of professional help, nonjudgment, stigmatisation, and past counselling experience. This study identified and highlighted a systematic approach to understanding specific socio-cognitive factors that support and hinder school counselling utilisation in an Asian school context. Implications arising from the study were discussed in the light of the findings.
Since June 2018, multi-site overdose prevention education and naloxone distribution has been available in the County of Skåne, Sweden. Among the participants there are individuals who have used naloxone to reverse overdose on multiple occasions (three times or more). Situations of overdose management are characterized by different conditions which inevitably lead to different decisions and outcomes.
Objectives
To investigate the complex interaction of individual, social, and environmental factors of opioid overdose management, how these overdose situations affect responders´ lives, what impact prior experiences may have on engagement in future overdose situations and if needs of support to deal with these situations are met.
Methods
Qualitative study employing semi-structured interviews with individuals trained at needle exchange programs within the region who have used naloxone on more than two occasions to reverse opioid overdose. Interviews will be conducted during Q4 2021 and analysed thematically during Q1 2022.
Results
Preliminary clinical observations point to the ambivalence between positive consequences of empowerment and pride in saving lives, and negative feelings of prior decisions and the burden to engage in future overdoses, in addition to insufficient access to support when dealing with these negative consequences.
Beyond living longer, it is increasingly important to live with more and better health during aging (1). Sexual well-being (SWB) was found to contribute to health and well-being in old age and is highly under-researched in the older population (2).
Objectives
This study aims to analyze SWB in a cross-cultural way through older Portuguese and Slovenian older samples.
Methods
We interviewed 136 older participants with an average age of 71.6 years old. Participants were Portuguese and Slovenian and lived in the community. Participants were subjected to semi-structured interviews and these were subjected to a content analysis process.
Results
The content analysis indicated nine themes related to SWB: self-reported good health; demonstrations of love; non-sexual joint activities; overall well-being and quality of life; partner support; positive self-image; being independent and active; sexual compatibility; and masturbation. Portuguese older adults experience their SWB associated mainly with self-reported good health and demonstrations of love, while Slovenians older adults associate their SWB mainly with non-sexual joint activities and overall well-being and quality of life.
Conclusions
The themes found in this study are fundamental evidence for cultural interventions and guidelines outlining in the context of sexual health in aging, mainly due to the scarcity of knowledge of SWB among older adults. 1.von Humboldt S et al. Sexual expression in old age: How older adults from different cultures express sexually? Sex Res Social Policy. 2020;1-15. 2.von Humboldt S et al. Are older adults satisfied with their sexuality? Outcomes from a cross-cultural study. Educ Gerontol. 2020;46:284-293.
The Covid-19 pandemic appeared globally (1), thus affecting the self-growth of the older population (2).
Objectives
The aim of this study is to identify and analyze the negative emotions felt during the pandemic, as well as their impact on self-growth of 226 older individuals of four nationalities: Mexican, Italian, Portuguese and Spanish.
Methods
Thus, a transnational qualitative survey was carried out. A content analysis was performed.
Results
Seven negative emotions were reported, namely: fear, sadness, anger, grief, annoyance, loneliness and shame. These emotions were considerably associated with the following themes: (1) Sharing experiences; (2) Availability of the partner; (3) Spirituality and religion; (4) Be active; (5) Interest in new projects; (6) Civic participation; (7) Sexual activity. Older participants with Mexican and Italian nationality reported that sharing experiences as the most relevant topic, while for the Portuguese and Spanish participants, having a partner available was more important.
Conclusions
This study demonstrated that negative emotions cooperated with the self-growth of older individuals during the Covid-19 pandemic. The heterogeneity of experiences lived by each culture was highlighted, underlining the positive side of negative emotions and their strong connection with the self-growth of the older people. 1.von Humboldt S et al. Smart technology and the meaning in life of older adults during the Covid-19 public health emergency period: A cross-cultural qualitative study. Int Rev Psychiatry, 2020; 1-10. 2. von Humboldt S et al. Does spirituality really matter? - A study on the potential of spirituality to older adult’s adjustment to aging. Jpn Psychol Res, 56;114-125.
Hwa-Byung is characterized by feelings of anger or resent about unreasonable social violence and trauma. Although Prevalence of Hwa-Byung is high in middle-aged, recently Hwa-Byung is occurred in young people. And it is suggested that young Hwa-Byung patients will show different patterns from middle-aged.
Objectives
The purpose of present study was to qualitatively analyze young Hwa-Byung patients’ experiences of symptoms and psychological characteristics related to antecedent events of Hwa-Byung.
Methods
10 women aged 20s were Interviewed using semi-structured questionnaires to in-depth study on their experiences related to Hwa-Byung. The interview data were analyzed using phenomenological approach in order to understand the essence of experiences. In particular, it was analyzed through five steps according to Giorgi (1985). First, by repeatedly reading the material, recurring themes were identified. Second, the meaning units were divided to capture important parts of participants’ statements. Third, similar meaning units were grouped together. Fourth, the determined meaning units were described in psychological term. Finally, research data were integrated and presented according to the described meaning units. Reliability between coders was higher than the minimum reliability coefficient.
Results
In symptoms, two themes and seven sub-themes were emerged. In psychological characteristics, three components and five sub-themes were derived. In particular, the antecedent events of young Hwa-Byung patients were related to vertical social relationships, suggesting that Hwa-Byung need to be understood under social context which make them angry.
Conclusions
Present study revealed the social context of Hwa-Byung by discussing the differences between young and middle-aged patients, and furthermore, differences between Hwa-Byung and depression, PTSD patients.
Nursing students’ attitudes towards mental illness will affect their perception about caring patients with mental illness and their willingness to work in the field of mental health. Evidence supported that contact with recovery patients can change people’s perception of mental illness.
Objectives
The study aims to explore the undergraduate nursing students’ encountering experience with recovery patients as educators.
Methods
A qualitative study using purposive sampling was conducted with undergraduate nursing students in southern Taiwan. Content analysis was used to identify the students’ experience as encountering with the recovery patient as an educator.
Results
As recovery patients participated in class, sharing their recovery journey and learning with students to produce a recovery story, it provided recovery patients and students an equal and mutually beneficial partnership. Four main themes about undergraduate nursing students’ attitudes were identified as. (1)Changing the mindset to patients with mental illness — We are human beings. There’s not much difference between us. (2)Turning positive attitudes towards patients with mental illness — We can compose a better life together! (3)Closing the distance between students and patients with mental illness — I am willing to be close to you. (4)Reflecting and growing in self-understanding and values — I am recovered, too.
Conclusions
This study found that the strategy of recovery patients as educators can improve future nurses’ attitudes towards mental illness, help them deeply learn about patient’ recovery journey. It might beneficial to help students developing their competency in patient-centered care. Future study could examine the effect of the recovery patients as educators.
Although several studies preliminary supported the effects of using smartphone mental health application (app) in patients with bipolar disorder (BD), patients’ subjective experience deserves more attention.
Objectives
The present study aimed to explore how the BD patient experienced while using the APP in detecting their mood relapse warning signs (MRW app) which has been developed by our team (Su et al., 2021).
Methods
The MRW app collects 2 passive (location and GPS removal distance) and 6 self-reported data (daily mood, wake and sleep time, the brief record of mood and life, voice pitch, speech tone and rhythm, facial expression, and weekly emotional scale). By using qualitative research design, 15 patients recruited from the psychiatric outpatient department in a medical center were in-depth interviewed.
Results
Four themes were identified as their subjective experience to use the app as: including positive and negative experience, facilitators, price, and barriers. Interconnected relationship was found in each theme; and counterbalancing associations between positive vs. negative experience, facilitators vs. price and barriers were also demonstrated.
Conclusions
Such first-person experience of using the app in illness detection could unveil technological myths and present its impacts upon patients’ lives in the real world. Implication for practice and future studies were be discussed.
Oder adults have been stereotyped (1), both explicitly and implicitly, as being asexual or naturally lacking sexual desires (2).
Objectives
The objective of this study is to analyse the perspectives of sexual unwellness (SU) of Portuguese and Slovenian older adults.
Methods
A qualitative research was carried out, in which these perceptions were analysed at a cultural level. Methods: The sample of this study consisted of 136 older participants, between 65 and 96 years of age. Participants were of two different nationalities and lived in the community. Participants were interviewed, and all interviews were carried out through the process of literal transcription and subsequent content analysis.
Results
Eight key mutually exclusive themes emerged from the interviews: unavailability of partner; traditional values; body restrictions; low self-esteem and well-being; poor social support; dissatisfaction with physical appearance; pain during sex; and difficulties meeting new people. Unavailability of partner was the most important theme (17.9%) for the studied sample and specifically among Portuguese participants. Conversely, difficulties meeting new people was the least reported theme (6.8%) for the entire sample. For Slovenians traditional values were most relevant with respect to feeling sexually unwell.
Conclusions
Older adults from two different countries reported diverse sexual experiences. Eight mutual-exclusive themes were extensively illustrated. 1.von Humboldt S et al. Sexual expression in old age: How older adults from different cultures express sexually? Sex Res Social Policy. 2020;1-15. 2.von Humboldt S et al. Are older adults satisfied with their sexuality? Outcomes from a cross-cultural study. Educ Gerontol. 2020;46:284-293.