Development of the Niggle App for Supporting Young People on Their Dynamic Journey to Well-being: Co-design and Qualitative Research Study.

BACKGROUND: Adolescence is a life stage characterized by intense development and increased vulnerability. Yet, young people rarely seek help for mental health, often due to stigma and embarrassment. Alarmingly, even those who do seek help may not be able to receive it. Interventions focused on well-being offer a protective factor against adversity. Highly effective, innovative, theoretically sound, accessible, and engaging mobile health (mHealth) interventions that can be used to look beyond mental ill-health and toward mental well-being are urgently needed. OBJECTIVE: We aimed to explore how young Australians conceptualize and construct recovery journeys from feeling unwell to being well in order to inform the conceptual design of a youth-led information-, resource-, and support-focused mHealth intervention. METHODS: A sample of young people, grouped by age (12-15 years, 16-19 years, and 20-25 years), took part in 3 in-person participatory design workshops (per group). Young people's understanding and representation of well-being, feeling unwell, and the recovery journey were investigated using visual and linguistic data collection methods: photo elicitation and journey mapping. A social constructionist perspective was used for thematic analysis to produce a conceptual model of the recovery journey. A mobile app was co-designed and all app functions were mapped through iterative development and testing by young people and a team of psychology, research, design and information technology experts. RESULTS: Young people (n=25) described a 6-stage journey with specific barriers and coping strategies. The findings, when situated within the personal recovery framework in mental health, emphasize the cyclic and iterative model of change. Through co-design, the new app-Niggle-was conceptualized as a visual representation of an amorphous problem, which can be addressed through app functions corresponding to the most helpful strategies that young people used to progress through the stages of their recovery journey. CONCLUSIONS: Niggle is available to offer support to young people for a range of problems and provides a hot link to counseling services in Australia. This paper elaborates on the process of in-depth qualitative data collection through visual, linguistic, and co-design methods. The findings of this study give insight into young people's understanding of well-being and recovery. This paper could aid the development of high-quality personalized mHealth interventions and support resources.

Supporting patients and carers affected by pancreatic cancer: A feasibility study of a counselling intervention.

PURPOSE: Patients with pancreatic cancer have extremely high unmet psychological and physical needs. Family carers of these patients have even higher levels of distress than patients. Our purpose was to assess the feasibility and acceptability of a counselling intervention in patients diagnosed with pancreatic cancer and their carers. METHODS: We conducted a single-arm feasibility study of the PREPARES (Patients and RElatives affected by PAncreatic cancer: Referral, Education and Support) pilot intervention. Patient and carer participants received up to nine counselling sessions delivered by a trained nurse via telephone and/or telehealth technology. The intervention, informed by self-efficacy theory, involved components to assess and address care needs, and provide feedback to clinicians. Feasibility was measured using participation and retention rates. Participants completed semi-structured interviews at the end of the intervention about acceptability. These were analysed using thematic analysis. RESULTS: Twelve people participated: five patients and seven carers (38% and 50% participation rates respectively). Most participants (eight) completed all nine counselling sessions; two chose to receive fewer sessions and two were discontinued requiring more intensive psychiatric support. The intervention was highly acceptable. Participants unanimously preferred the telephone over video-conferencing and to receive counselling separately from their carer/patient. The main perceived benefits were emotional support, the nurse-counsellors' knowledge, care coordination and personalised care. Suggested improvements included a welcome pack about their nurse-counsellor and that sessions should continue beyond nine sessions if required. CONCLUSIONS: The PREPARES intervention was feasible and highly acceptable. This low-cost intervention provided much-needed support to people affected by this devastating disease.

Patterns of, and barriers to supportive care needs assessment and provision for Australian women with gynecological cancer and their caregivers: a mixed-methods study of clinical practice.

OBJECTIVES: To document the current clinical practice in 2017 for assessment of supportive care needs and provision of supportive care to women with gynecological cancer and their caregivers in Australia, and to identify the main enablers and barriers to care provision. METHODS: A total of 64 health professionals who care for Australian women with gynecological cancer responded to an electronic survey which explored their use of needs assessment, service-level processes and protocols for support service provision, and identified enablers and barriers to provision of care to both patients and caregivers. Eight respondents underwent an additional in-depth interview to elaborate on enablers, barriers, and gaps in the provision of supportive care. RESULTS: Mostly, needs assessment for women and caregivers was part of current practice but done without validated tools or a checklist. Only 30% of respondents reported having documented referral pathways. Most respondents simply recorded a plan for meeting needs within the patients' medical record (63% for patients; 46% for caregivers) rather than using a formalized care plan (15% for patients; 6% for caregivers). The interviewees' comments supported survey results that having sufficient time to discuss issues was both the most important enabling factor and the greatest barrier to successful supportive care provision. The interviewees further discussed variations in needs based on age, cultural background, and phases within the cancer care continuum, and that best practice supportive care should involve a multidisciplinary team and customizable protocols. SIGNIFICANCE OF RESULTS: There is much room for improvement in the assessment of needs and provision of supportive care to women with gynecological cancer and their caregivers. Approaches to optimize use of consultation time (e.g., needs assessment tools and referral protocols) are necessary. Flexibility in the form and mode of delivery of support may be required to meet diverse personal preferences and incorporate caregivers.

"I Wasn't Gonna Let It Stop Me": Exploring Women's Experiences of Getting Through Chemotherapy for Ovarian Cancer.

BACKGROUND: Many women with ovarian cancer experience significant chemotherapy-related adverse effects during treatment and thus cannot complete it without dose reductions and/or delays. There is some indication that chemotherapy completion is associated with improved survival, although currently little is known about what helps women get through chemotherapy. OBJECTIVE: The aim of this study was to explore women's accounts of the factors they believed were helpful during their ovarian cancer treatment. METHODS: Using a qualitative approach within a critical realist framework, we conducted interviews with 18 women who had received chemotherapy for ovarian cancer and analyzed the data thematically. RESULTS: We identified 3 main themes related to women's experiences of dealing with chemotherapy: "optimistic tenacity," which illustrates a specific stoic identity that women assumed during treatment; "self-care," which reflects the health behaviors and activities women engaged in and lifestyle adjustments they made; and "support systems," which emphasizes the importance of social, emotional, and medical support and the specific needs shared by women undergoing treatment for ovarian cancer. CONCLUSIONS: Our findings contribute to a deeper understanding of women's unique experiences of treatment that may influence whether they complete chemotherapy for ovarian cancer. IMPLICATIONS FOR PRACTICE: This study highlights the central role of women's optimistic determination within a wider self-caring and well-supported context of treatment; we aim to provide feedback and guidance to health professionals caring for women with ovarian cancer.

The Imperative for a Triumph-Over-Tragedy Story in Women's Accounts of Undergoing Chemotherapy for Ovarian Cancer.

We aimed to examine how women construct their experiences of chemotherapy treatment for ovarian cancer. Through semistructured interviews, we explored the accounts of 18 Australian women about their experiences within a broader cultural imperative-or discourse-to "think positively." By applying a critical realist lens to the analysis, we identified two discursive themes that shaped women's accounts. The "feeling different and managing support" theme highlights the identity challenges women faced because of the lack of formal support for ovarian cancer. Conversely, the theme "women's reconstructions of difficult experiences" illustrates the imperative for women to present a positive story as a way of restoring their position of a lucky and stoic survivor. Such speaking served to mask some of the underlying difficulties that were part of these women's experiences. Health care professionals need to consider looking for the hidden stories of vulnerability that lie beneath the triumphant ones.

Maternal psychological distress during pregnancy does not increase the risk for adverse birth outcomes.

Maternal psychological distress during pregnancy is a potential risk factor for various birth complications. This study aimed to explore psychological factors associated with adverse birth outcomes. Symptoms of psychological distress, individual characteristics, and medical complications were assessed at two time points antenatally in 285 women from Australia and New Zealand; birth outcomes were assessed postpartum, between January 2014 and September 2015. Hierarchical multiple regression analyses were conducted to examine the relation of psychological distress to adverse birth outcomes. Medical complications during pregnancy, such as serious infections, placental problems and preeclampsia, and antenatal cannabis use, were the factors most strongly associated with adverse birth outcomes, accounting for 22 percent of the total variance (p < .001). Symptoms of depression and/or anxiety, low social support, and low sense of coherence were not associated with birth complications. In unadjusted analyses, self-reported diagnosis of anxiety disorder during pregnancy and an orientation toward a Regulator mothering style were associated with adverse birth outcomes; however, after controlling for medical complications, these were no longer associated. Our study results indicate that antenatal depressive and/or anxiety symptoms were not independently associated with adverse birth outcomes, a reassuring finding for women who are already psychologically vulnerable during pregnancy.

"I just feel like I am broken. I am the worst pregnant woman ever": A qualitative exploration of the "at odds" experience of women's antenatal distress.

Advances in perinatal mental health research have provided valuable insights around risk factors for the overall development of maternal distress. However, there is still a limited understanding of the experience of women struggling emotionally during pregnancy. We explored how women view, experience, and interpret psychological distress antenatally. Eighteen Australian women participated in in-depth interviews that were analyzed thematically within a critical realist theoretical framework. We present and situate the current findings within the dominant discourse of the good mother, which arguably promotes guilt and stigma and results in women self-labeling as bad mothers.

Young Love: Romantic Concerns and Associated Mental Health Issues among Adolescent Help-Seekers.

Over 50% of young people have dated by age 15. While romantic relationship concerns are a major reason for adolescent help-seeking from counselling services, we have a limited understanding of what types of relationship issues are most strongly related to mental health issues and suicide risk. This paper used records of 4019 counselling sessions with adolescents (10-18 years) seeking help from a national youth counselling service for a romantic relationship concern to: (i) explore what types and stage (pre, during, post) of romantic concerns adolescents seek help for; (ii) how they are associated with mental health problems, self-harm and suicide risk; and (iii) whether these associations differ by age and gender. In line with developmental-contextual theory, results suggest that concerns about the initiation of relationships are common in early adolescence, while concerns about maintaining and repairing relationships increase with age. Relationship breakups were the most common concern for both male and female adolescents and for all age groups (early, mid, late adolescence). Data relating to a range of mental health issues were available for approximately half of the sample. Post-relationship concerns (including breakups) were also more likely than pre- or during-relationship concerns to be associated with concurrent mental health issues (36.8%), self-harm (22.6%) and suicide (9.9%). Results draw on a staged developmental theory of adolescent romantic relationships to provide a comprehensive assessment of relationship stressors, highlighting post-relationship as a particularly vulnerable time for all stages of adolescence. These findings contribute to the development of targeted intervention and support programs.

Pregnancy-specific distress: the role of maternal sense of coherence and antenatal mothering orientations.

BACKGROUND: Maternal mental health during pregnancy has been identified as a key factor in the future physiological, emotional and social development of both the mother and her baby. Yet little is known about the factors that contribute to increased levels of pregnancy-specific distress. The present study investigated the role of two psychosocial and personality-based constructs, namely women's sense of coherence (SoC) and their mothering orientations, on their pregnancy-specific distress. DESIGN: During their second trimester of pregnancy, 293 Australian and New Zealand women participated in an online study. Hierarchical multiple regression analysis was used to determine the unique contribution of women's SoC (Sense of Coherence Scale, SoC 13) and their antenatal mothering orientation (Antenatal Mothering Orientation Measure-Revised, AMOM-R) to pregnancy-specific distress (Revised Prenatal Distress Questionnaire, NuPDQ). RESULTS: Low SoC was the best determinant of women's pregnancy-specific distress, accounting for over 45% of the variance (ß = -0.33, p < 0.001, 95% CI [-0.43, -0.23]). A Regulator mothering orientation was correlated with distress but did not have a unique contribution in the final model. CONCLUSIONS: This study further highlights the importance of better understanding women's perceptions of emotional health and their mothering role while taking into consideration their wider social context.

Gamification for health and wellbeing: A systematic review of the literature.

BACKGROUND: Compared to traditional persuasive technology and health games, gamification is posited to offer several advantages for motivating behaviour change for health and well-being, and increasingly used. Yet little is known about its effectiveness. AIMS: We aimed to assess the amount and quality of empirical support for the advantages and effectiveness of gamification applied to health and well-being. METHODS: We identified seven potential advantages of gamification from existing research and conducted a systematic literature review of empirical studies on gamification for health and well-being, assessing quality of evidence, effect type, and application domain. RESULTS: We identified 19 papers that report empirical evidence on the effect of gamification on health and well-being. 59% reported positive, 41% mixed effects, with mostly moderate or lower quality of evidence provided. Results were clear for health-related behaviours, but mixed for cognitive outcomes. CONCLUSIONS: The current state of evidence supports that gamification can have a positive impact in health and wellbeing, particularly for health behaviours. However several studies report mixed or neutral effect. Findings need to be interpreted with caution due to the relatively small number of studies and methodological limitations of many studies (e.g., a lack of comparison of gamified interventions to non-gamified versions of the intervention).

The experience of psychological distress, depression, and anxiety during pregnancy: A meta-synthesis of qualitative research.

OBJECTIVE: to systematically review qualitative research that explores the experience of maternal antenatal psychological distress, such as depression, anxiety and stress during pregnancy. METHOD: a meta-synthesis was conducted to integrate the findings of qualitative studies. Eight final eligible studies were scrutinised, recurring themes were extracted and compared across studies, and core themes were identified. FINDINGS: five core themes of the experience of pregnancy distress were identified: Recognising that things are not right, Dealing with stigma, Negotiating the transformation, Spiralling down, and Regaining control. In the interpretation of these concepts the experience of maternal antenatal distress was depicted as a process similar to the one of grief and loss, as a result of women׳s inability to situate their experience within the 'perfect mother' discourse. KEY CONCLUSIONS: women who experience psychological distress undergo a specific process of transformation towards motherhood that begins during pregnancy. This process is exacerbated by their interpretation of their experience as deviant and often as inadequate. IMPLICATIONS FOR PRACTICE: this review will assist health professionals in translating and negotiating the transformation towards motherhood for women experiencing pregnancy distress, in a timely and meaningful manner.

The effects of maternal depression, anxiety, and perceived stress during pregnancy on preterm birth: A systematic review.

BACKGROUND: Experiencing psychological distress such as depression, anxiety, and/or perceived stress during pregnancy may increase the risk for adverse birth outcomes, including preterm birth. Clarifying the association between exposure and outcome may improve the understanding of risk factors for prematurity and guide future clinical and research practices. AIM: The aims of the present review were to outline the evidence on the risk of preterm associated with antenatal depression, anxiety, and stress. METHODS: Four electronic database searches were conducted to identify quantitative population-based, multi-centre, cohort studies and randomised-controlled trial studies focusing on the association between antenatal depression, anxiety, and stress, and preterm birth published in English between 1980 and 2013. FINDINGS: Of 1469 electronically retrieved articles, 39 peer-reviewed studies met the final selection criteria and were included in this review following the PRISMA and MOOSE review guidelines. Information was extracted on study characteristics; depression, anxiety and perceived stress were examined as separate and combined exposures. There is strong evidence that antenatal distress during the pregnancy increases the likelihood of preterm birth. CONCLUSION: Complex paths of significant interactions between depression, anxiety and stress, risk factors and preterm birth were indicated in both direct and indirect ways. The effects of pregnancy distress were associated with spontaneous but not with medically indicated preterm birth. Health practitioners engaged in providing perinatal care to women, such as obstetricians, midwives, nurses, and mental health specialists need to provide appropriate support to women experiencing psychological distress in order to improve outcomes for both mothers and infants.

Exploring beliefs and expectations about motherhood in Bulgarian mothers: a qualitative study.

OBJECTIVE: to provide a methodologically robust and in-depth exploration of maternal expectations and beliefs in a non-clinical sample of Bulgarian mothers who described their ideas about motherhood postnatally. DESIGN: qualitative study using face to face interviews for data collection. SETTING: the cities of Sofia and Varna, Bulgaria. PARTICIPANTS: 10 women, 7 primiparae and 3 multipara, aged 28-32 years, who gave birth within the last 18 months. METHODS: interviews were carried out using a semi-structured schedule. Discussions were audio-recorded with participants' consent, translated and transcribed. Thematic analysis was used under the contextualist theoretical framework. FINDINGS: four general themes of women's expectations about motherhood were identified, concerning expectations of motherhood, parenting self-confidence, beliefs about the mother-infant dyad and anticipated social support. Findings suggest that there was a substantial discrepancy between expectations and the reality of motherhood, for primiparae and multipara mothers. Unrealistic expectations about motherhood were related to a more difficult postnatal adjustment, lowered self-esteem and feelings of inadequacy. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: the way in which women view themselves as mothers during pregnancy can have a significant impact on their emotional well-being following birth. The implications of these findings are discussed with particular reference to promoting a successful adjustment to motherhood through appropriate antenatal care, focussing on maternal expectations about their new role.