Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Postavaru GI

PROVIDER: S-EPMC7897781 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Postavaru Gianina-Ioana GI Swaby Helen H Swaby Rabbi R

Palliative medicine 20201218 2

<h4>Background</h4>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.<h4>Aim</h4>To provide an in-depth a ...[more]

PMID: 33339475

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Project description:BackgroundAlthough the number of children living with complex care needs (CCN) is increasing worldwide, there is limited data on the experience of fathers caring for children with CCN. This paper reports on findings specific to fathers' experiences of caring for their child with CCN and highlights recommendations provided for parents of children with CCN, service providers, and policymakers. The findings emerged from a larger study designed to examine how Canadian families of children with CCN participate in society.MethodsWe used the qualitative research approach of ethnography and arts-based methodologies (ecomaps and photovoice) as well as purposive and snowball sampling techniques. Four parents were engaged as advisors and twenty-nine fathers participated in interviews (all were married or in a relationship; age range of 28 to 55 years). In line with an ethnographic approach, data analysis involved several iterative steps including comparing data from the first, second, and third set of interviews and refining themes.ResultsOne overarching theme, striving to be there for the child with CCN, was identified. Five supporting themes further exemplified how fathers strived to be there for their child: 1) contributing to the parental team through various roles; 2) building accessibility through adaptation; 3) engaging in activities with the child; 4) expressing admiration and pride in their children; and 5) meaning making. Recommendations for parents included making and nurturing connections and asking for help while recommendations for healthcare and social service providers included communicating authentically with families and listening to parents. Fathers also indicated that leadership and funding for programs of families of children with CCN should be priorities for policymakers.ConclusionsIn addition to documenting fathers' active involvement in their child's care and development, our findings provide new insights into how fathers make participation in everyday life accessible and inclusive for their children. Study findings also point to 1) priority areas for policymakers (e.g., accessible physical environments); 2) factors that are critical for fostering collaborative care teams with fathers; and 3) the need for complex care teams in the adult health care system. Implications for those providing psychosocial support for these families are noted as well as knowledge gaps worthy of future exploration such as the role of diversity or intersectionality in fathering children with CCN.

Project description:BackgroundResearch suggests that registered nurses (RNs) do not feel adequately prepared to support patients with intellectual disability disorder (IDD). This is unsurprising, as few European health sciences curricula include undergraduate and graduate training courses in IDD. As RNs are often in the front line of care, eliciting in-depth knowledge about how they experience nursing this group of patients is vital. Our aim in this study was to develop a conceptual understanding about RNs' experiences of nursing patients with IDD.MethodWe undertook a systematic review and meta-ethnography to synthesise qualitative research studies found in PubMed, CINAHL, PsycINFO, ERIC databases and by manual searching to identify additional studies. We condensed translatable second-order constructs, and developed an idiomatic translation. Finally, we formulated line of argument (LOA) syntheses to capture the core of the idiomatic translations.ResultsWe included eighteen published studies from eight countries involving 190 RNs. The RNs' experience of nursing patients with IDD were reflected in 14 LOAs. Six of these reflected a tentatively more distinctive and at times unique conceptualisation of RNs' experience of nursing this group of patients. The remaining eight LOAs represented a conceptualisation of nursing per se, a conceptualisation of nursing that was interpreted as a universal experience regardless of context and patient group.ConclusionLack of awareness and knowledge are likely breeding grounds for the 'otherness' that still surrounds this group of patients. In encounters between patients and RNs, focusing on the person behind the disability label could be one way to secure relevant nursing care for patients with IDD. Undertaking appropriate under- and postgraduate education alongside the implementation of nursing models focusing on patient-centred care would help RNs in reducing the health and care inequalities this group of patients still face.Trial registrationPROSPERO 2017: CRD42017077703.

Project description:AimTo conduct a meta-ethnographic study of the experiences, meanings and ways of 'dealing with' symptoms or a diagnosis of postnatal depression amongst migrant women living in high income countries.BackgroundPrevalence of postnatal depression is highest amongst women who are migrants. Yet many women do not seek help for their symptoms and health services do not always respond appropriately to migrant women's needs. Studies have reported migrant women's experiences of postnatal depression and it is timely to synthesise findings from these studies to understand how services can be improved.DesignA meta-ethnographic synthesis of 12 studies reported in 15 papers.Data sourcesFive databases were searched for papers published between January 1999 and February 2016.Review methodsThe quality of included studies was assessed using the Critical Appraisal Skills Program tool. The synthesis process was guided by the seven steps of meta-ethnography outlined by Noblit and Hare.FindingsFour key metaphors were identified: "I am alone, worried and angry-this is not me!"; 'Making sense of my feelings' 'Dealing with my feelings' and 'What I need to change the way I feel!'. Primarily women related their feelings to their position as a migrant and as women, often living in poor socio-economic circumstances and they were exhausted keeping up with expected commitments. Many women were resourceful, drawing on their personal strengths and family / community resources. All the studies reported that women experienced difficulties in accessing appropriate services.ConclusionThe meta-ethnographic study demonstrates the impact of migration on perinatal mental health, particularly for women lacking family support, who have no employment, a precarious migration status and/or relationship conflict. Migrant women are resourceful and this requires support through appropriate services. Further research is needed to evaluate effective support strategies for migrant women in the perinatal period.

Project description:Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s).Conclusion: Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies. What is Known: • In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance. What is New: • Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship. • Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes. • To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies.

Dataset Information

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

Background

Aim

Design

Data sources

Results

Conclusion

Publications

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

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