The FATHER Model of Loss and Grief After Child's Life-Limiting Illness.

CONTEXT: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. OBJECTIVES: Using a meta-ethnographic approach, we systematically reviewed the literature around fathers' predeath and postdeath experiences of loss and grief. DATA SOURCES: We searched Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, and Science Direct, and used the meta-ethnography reporting guidelines; the Preferred Reporting Items for Systematic Reviews and Meta-Analyses; and sampling strategy, type of study, approaches, range of years, limits, inclusion and exclusions, terms used, and electronic sources recommendations. STUDY SELECTION: We used the Guide to Children's Palliative Care and the directory of LLCs to select qualitative articles published up until the end of March 2023 that described fathers' predeath and postdeath experiences of loss and grief after their child's LLC. We excluded studies that failed to differentiate outcomes between mothers and fathers. DATA EXTRACTION: Extracted data included study details, participants' characteristics, response rate, source of participants, method and time of data collection, children's characteristics, and quality assessment. First-order and second-order data were also extracted. RESULTS: Forty studies informed a FATHER model of loss and grief. This highlights both similarities (ambivalence, trauma responses, fatigue, anxiety, unresolved grief, guilt) and distinct features defining the predeath and postdeath experiences of loss and grief. LIMITATIONS: There was a bias toward greater mother participation in research. Specific categories of fathers remain underrepresented in palliative care literature. CONCLUSIONS: Many fathers experience disenfranchised grief and deterioration in mental health after a child's diagnosis and postdeath. Our model opens possibilities for personalized clinical support in the palliative care system for fathers.

Receiving and breaking bad news: A qualitative study of family carers managing a cancer diagnosis and interactions with healthcare services.

AIMS: To explore family carer experiences of managing the process of receiving and breaking bad news about cancer. BACKGROUND: Family carers' experiences of bad news are underrepresented in the literature. This study involved oncology staff with personal experience of caregiving and carers to develop broader insights into the range of needs and difficulties experienced by family members in the process of managing a cancer diagnosis. This can help facilitate subsequent interactions with healthcare professionals and improve continuity of care. DESIGN: This is a descriptive qualitative study informed by the theory of social constructionism. Data were analysed using template analysis. METHODS: Data were collected using semi-structured interviews and focus groups with 4 healthcare professionals and 17 family carers between January and July 2018. A purposive sampling strategy was used. Interviews were transcribed verbatim to explore participant experiences and perspectives on family carers managing a cancer diagnosis. FINDINGS: Three key themes were identified: (1) receiving the bad news; (2) management of bad news and (3) interaction with healthcare and support services. These and associated subthemes are discussed, with recommendations for future research and practice. CONCLUSIONS: There was variability in the experiences and needs of carers involved in receiving and breaking the bad news. IMPACT: Although family members experienced a multitude of difficult emotions when the bad news was shared, they were not often able to discern help from healthcare professionals with sharing the diagnosis with the patient and others. This impacted on access to and use of healthcare and support services. Individualized approaches to communication are needed to enable carers to seek support and provide perspectives on the patient home environment and family structure. This can help tailor breaking the bad news and care plans. PUBLIC CONTRIBUTION: Anonymised results were shared with family carers to validate the congruency of the codes with their experiences.

A Study Protocol to Explore and Improve Access to Medical Services and Information for Recently Diagnosed Elderly Patients with Cancer in Rural Settings.

INTRODUCTION: This two-phase study seeks to contribute to research in the field of rural cancer health; specifically, the aim is to gain insight into the experiences of seeking, accessing and using information and health services throughout the cancer journey (diagnosis, treatment and follow-up care) for recently diagnosed (≤6 months) older patients (≥65 years) in rural areas. METHODS AND ANALYSIS: Data will be collected through in-depth semi-structured interviews. In phase 1 (before 23rd March 2020) interviews were conducted with healthcare professionals (HCP) to explore their experiences of delivering care to their elderly patients. In the second phase (starting January 2021) we will conduct interviews with cancer patients to understand the impact of COVID-19 and shielding on their experiences of being diagnosed, attending appointments and accessing and receiving support from community organisations and informal support from family and friends. Data gathered will be analysed using the Framework Method. ETHICS: The study has been approved by the Health Research Authority and the United Lincolnshire Hospitals NHS Trust. Initial favourable ethical opinion was granted on 1st October 2019. Second favourable ethical opinion for amendments to reflect the impact of COVID-19 was received on 10th August 2020. The study protocol has been registered on Research Registry.

A meta-ethnographic study of fathers' experiences of caring for a child with a life-limiting illness.

BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. However, research focusing on fathers' needs remains sparse and is often diluted among a predominant 'mother's voice', raising questions about whether practices in clinical settings meet fathers' needs. AIM: To provide an in-depth assembly of the current state of knowledge around fathers' experiences of caring for their children diagnosed with life-limiting conditions and understand the implications for healthcare services and policies. DESIGN: A meta-ethnography was conducted to synthesise findings from existing qualitative studies exploring fathers' experiences of caring. DATA SOURCES: Four electronic databases (PubMed, PsycINFO, CINAHL and Science Direct) were searched up until April 2020. Qualitative studies exploring fathers' care experience and published in English language were included. The Critical Appraisal Skills Programme (CASP) checklist was employed for study quality appraisal. No temporal limits were used. RESULTS: Sixty-three studies met the inclusion criteria. Thirty life-limiting conditions were included. Based on responses from 496 fathers, a conceptual model was developed which translates key experiences within the fathers' caregiving journeys. The overarching concepts identified were: the paradox of support, challenges in the caring process, 'nobody thinks of men', impact on family life and the fall of the curtain: an irrevocably altered world. These and associated sub-concepts are discussed, with recommendations for future research and practice provided. CONCLUSION: The findings indicate the value of a family-oriented approach to develop psychosocial interventions and support channels for fathers, thus empowering them whilst reducing the care-giving burden on the family unit.

'I Have Had to Stop Singing Because I Can't Take the Pain': Experiences of Voice, Ability, and Loss in Singers With Hypermobility Spectrum Disorders.

OBJECTIVE: This study explored the voice experience, singing ability, and wellbeing of singers diagnosed with Hypermobility Spectrum Disorder (HSD) or hypermobile Ehlers-Danlos Syndrome (h-EDS). STUDY DESIGN: This was a mixed-method study. A purposive sampling strategy was used. Data were collected via an online survey, using written closed and open-ended questions. METHODS: 276 adults completed the survey. This study focuses on a subset of professionally-trained singers (n=71). Responses elicited information about participants' voice health and function, symptoms of hypermobility, singing experiences and training. Data were analysed using template analysis. RESULTS: Many participants reported wide vocal ranges and enjoyment of singing but 74.6% of participants across all age groups (18-60 years) experienced voice difficulties. Three common themes were identified: (1) 'My unreliable voice': The ups and downs; (2) Wider effects of HSD/h-EDS on singers, and (3) Need for acknowledgment and support. CONCLUSIONS: Voice difficulties and hypermobility-related health conditions affected the participants' abilities to sing and perform; this impacted their professional and personal opportunities, communication, relationships, and wellbeing. Our results indicate that symptoms of voice disorder worsen over time. We suggest practical strategies that singers and training providers could implement to support hypermobile singers. More research is needed to fully understand voice difficulties in singers with HSD/H-EDS and to inform tuition and support.

Self-Determination Theory as a Theoretical Framework for a Responsive Approach to Child Feeding.

Supporting positive childhood eating behaviors is a central and ongoing priority for health care providers, encompassing both health outcomes for typical eaters and best practice in relation to pediatric feeding challenges. Building on existing work, this perspective draws on literature from multiple fields to recommend the use of Self-Determination Theory as a framework for responsive feeding. Additionally, it contributes to the definition and conceptualization of responsive feeding. The 3 basic needs proposed by Self-Determination Theory (autonomy, relatedness and competence) have significant implications for both professional practice and the direction of future research.

Maternal psychosocial consequences of twins and multiple births following assisted and natural conception: a meta-analysis.

The aim of this meta-analysis is to provide new evidence on the effects on maternal health of multiple births due to assisted reproductive technology (ART). A bibliographic search was undertaken using PubMed, PsycINFO, CINAHL and Science Direct. Data extraction was completed using Cochrane Review recommendations, and the review was performed following PRISMA and MOOSE guidelines. Meta-analytic data were analysed using random effects models. Eight papers (2993 mothers) were included. Mothers of ART multiple births were significantly more likely to experience depression (standardized mean difference [SMD] d = 0.198, 95% CI 0.050 - 0.345, z = 2.623, P = 0.009; heterogeneity I(2) = 36.47%), and stress (SMD d = 0.177, 95% CI 0.049 - 0.305, P = 0.007; heterogeneity I(2) = 0.01%) than mothers of ART singletons. No difference in psychosocial distress (combined stress and depression) (SMD d = 0.371, 95% CI -0.153 - 0.895; I(2) = 86.962%, P = 0.001) or depression (d = 0.152, 95% CI -0.179 - 0.483: z = 0.901; I(2) = 36.918%) were found between mothers of ART and naturally conceived multiple births. In conclusion, mothers of ART multiple births were significantly more likely to have depression and stress than mothers of ART singletons, but were no different from mothers of naturally conceived multiples.