Best Practice In Provider/Parent Interaction
Pediatrics; Quality; Parents Experiences; Communication; Hospital Staff; Pediatric Palliative Care; Grounded Theory; Social Sciences; Biomedical; Family Perspectives; Qualitative Analysis; Empathy; Medicine; Practice Guidelines; Childs Death; Canada; Social Sciences; Interdisciplinary; Patient-provider; Reflection; Information Science & Library Science; Palliative Care; Relationships; Best Practice
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.
Davies B; Steele R; Krueger G; Albersheim S; Baird J; Bifirie M; Cadell S; Doane G; Garga D; Siden H; Strahlendorf C; Zhao Y
Qualitative Health Research
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">10.1177/1049732316664712</a>
Understanding How Bereaved Parents Cope With Their Grief To Inform The Services Provided To Them
America, North; adolescents/ youth; bereavement/grief; cancer, coping, psychology/psychosocial issues; children; end-of-life issues; families, caregiving; infants; interpretive description; interviews, semistructured; knowledge transfer; palliative care; program evaluation; psychosocial issues; relationships, parent–child; research, clinical; research, qualitative
Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up and support services offered to bereaved parents. Our findings situated parents’ individual experiences of coping within the social and institutional contexts in which they grieved. In the first year after the death of their child, parents regulated their intense feelings of grief through loss-oriented, restoration-oriented, and/or meaning reconstruction strategies. Often, parents’ relationships with others and many of the bereavement follow-up and support services helped them in this regard. This article also explores how the results may aid service providers in accompanying parents in a way that optimizes outcomes for these parents.
Stevenson M; Achille M; Liben S; Proulx MC; Humbert N; Petti A; Macdonald ME; Cohen SR
Qualitative Health Research
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1177/1049732315622189" target="_blank" rel="noreferrer">10.1177/1049732315622189</a>
"You Can Only Give Warmth to Your Baby When It's Too Late": Parents' Bonding With Their Extremely Preterm and Dying Child.
Embodied Parenthood; End-of-life; Extreme Prematurity; Neonatal Intensive Care Unit; Palliative And Bereavement Care; Parental Bonding; Qualitative Content Analysis; Switzerland
This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the physical distance to the child, medical uncertainties, and upcoming decisions. Even though they are considered to be parents (assigned parenthood), they cannot act as primary caregivers. Instead, they depend on professional instructions for access and care. Embodied parenthood can be experienced only at the end-of-life, that is, during the dying trajectory and after the child's death. Professionally supporting parents during this compressed process (from assigned and distant to embodied parenthood) contributes fundamentally to their perception of being a family and supports their mourning. This calls for the further establishment of palliative and bereavement care concepts in neonatology.
Abraham A; Hendriks MJ
Qualitative Health Research
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1177/1049732317721476" target="_blank" rel="noreferrer">10.1177/1049732317721476</a>
Canadian Care Providers' and Pregnant Women's Approaches to Managing Birth: Minimizing Risk While Maximizing Integrity
N2N
We employed grounded theory to explain how Canadian pregnant women and care providers manage birth. The sample comprised 9 pregnant women and 56 intrapartum care providers (family doctors, midwives, nurses, obstetricians, and doulas [individuals providing labor support]). We collected data from 2008 to 2009, using focus groups that included care providers and pregnant women. Using concurrent data collection and analysis, we generated the core category: minimizing risk while maximizing integrity. Women and providers used strategies to minimize risk and maximize integrity, which included accepting or resisting recommendations for surveillance and recommendations for interventions, and plotting courses vs. letting events unfold. Strategies were influenced by evidence, relationships, and local health cultures, and led to feelings of weakness or strength, confidence or uncertainty, and differing power- and responsibility-sharing arrangements. The findings highlight difficulties resisting surveillance and interventions in a risk-adverse culture, and the need for attention to processes of giving birth.
Hall WA; Tomkinson J; Klein MC
Qualitative Health Research
2012
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732311424292" target="_blank" rel="noreferrer">10.1177/1049732311424292</a>
Adolescent Sibling Bereavement: An Ongoing Attachment
sibling bereavement
A taxonomy of the adolescent sibling bereavement process was developed from the responses of 157 bereaved adolescents to the question "If you could ask or tell your dead sibling something, what would it be?" The taxonomy had six mutually exclusive categories: regretting, endeavoring to understand, catching up, reaffirming, influencing, and reuniting. Pervasive throughout the taxonomy was the theme of "ongoing attachment"; that is, the emotional and social bond with the deceased sibling remains continuous throughout the bereavement process. The notion of ongoing presence illustrates the timelessness of adolescent bereavement and the infiniteness of the sibling bond. The phenomena of "ongoing presence" and timelessness challenge current medical science conceptualizations of bereavement that postulate that grief is time bound and that healthy recovery depends on severance of emotional bonds with the deceased. Qualitative and quantitative studies are needed to develop a substantive theory of adolescent sibling bereavement that is developmentally appropriate, accounts for variability by cause of and circumstances surrounding the death, and is culturally relevant.
1992-05
Hogan N; DeSantis L
Qualitative Health Research
1992
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/104973239200200204" target="_blank" rel="noreferrer">10.1177/104973239200200204</a>
Defensive mothering in HIV-positive mothers
mothers
1999
Ingram D; Hutchison Sally A
Qualitative Health Research
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/104973299129121811" target="_blank" rel="noreferrer">10.1177/104973299129121811</a>
Using reflexivity to optimize teamwork in qualitative research
1999
Barry CA; Britten N; Barber N; Bradley C; Stevenson F
Qualitative Health Research
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/104973299129121677" target="_blank" rel="noreferrer">10.1177/104973299129121677</a>
The triggers of heightened parental uncertainty in chronic, life-threatening childhood illness
Parent caregivers
Advances in the treatment of childhood diseases have created a population of technology-dependent and medically fragile children whose life expectancy is unknown and whose future quality of life is unpredictable. Seven commonly occurring events were found to precipitate increased parental anxiety by triggering a heightened awareness of the ucnertainty concerning the child's survival. These triggers are presented, with supporting data from parental interviews and published autobiographical accounts, as a set of causes, contexts, conditions, and interactions that account for predictable variation in the intensity of parental awareness of uncertainty. The findings reported here constitute one aspect of the grounded theory of living under conditions of sustained uncertainty for families who have a child with a chronic, life-threatening illness. That theory, it is proposed, is related to the larger chronic illness trajectory framework of Strauss and associates. Implications for practice are suggested.
1995
Cohen MH
Qualitative Health Research
1995
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/104973239500500105" target="_blank" rel="noreferrer">10.1177/104973239500500105</a>
Validity in qualitative research
Qualitative Research; Research
2001
Whittemore R
Qualitative Health Research
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/104973201129119299" target="_blank" rel="noreferrer">10.1177/104973201129119299</a>
Gender roles and/or styles in crisis: An integrative analysis of the experiences of fathers of children with cancer
Fathers; Role; gender
2001
Chesler MA; Parry C
Qualitative Health Research
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/104973201129119163" target="_blank" rel="noreferrer">10.1177/104973201129119163</a>
Constructing qualitatively derived theory: Concept construction and concept typologies
concept development; qualitatively derived theory
2004
Morse JM
Qualitative Health Research
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732304269676" target="_blank" rel="noreferrer">10.1177/1049732304269676</a>
Fathers' experience of parenting a child with juvenile rheumatoid arthritis
Child; Fathers
2004
McNeill T
Qualitative Health Research
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732303262374" target="_blank" rel="noreferrer">10.1177/1049732303262374</a>
Writing the proposal for a qualitative research methodology project
Qualitative Research; Research; Time; design
2003
Sandelowski M; Barroso J
Qualitative Health Research
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732303013006003" target="_blank" rel="noreferrer">10.1177/1049732303013006003</a>
Mindfulness in hospice care: Practicing meditation in action
2005
Bruce A; Davies B
Qualitative Health Research
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732305281657" target="_blank" rel="noreferrer">10.1177/1049732305281657</a>
Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed
U.S. Gov't; Adaptation; PedPal Lit; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; but it has not been examined in families whose children have both complex physical and developmental disabilities. Developmental delays compounded the effects of the children's physical chronic conditions; P.H.S. Schools; parents recognized normal and positive aspects of their lives while acknowledging the profound challenges that their families faced. Parents concluded that it was possible to have a good life that was not necessarily normal by usual standards .; Preschool Chronic Disease Comparative Study Cost of IllnessDevelopmental DisabilitiesDisabled Children Family/psychology Humans Qualitative Research Research Support; Psychological Caregivers/psychology ChildChild Rearing Child; severely affecting how families organized and managed their daily lives; with the result that families did not fit currently established attributes of normalization. Instead
2005
Rehm RS; Bradley JF
Qualitative Health Research
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732305276754" target="_blank" rel="noreferrer">10.1177/1049732305276754</a>
Interviewing young children: explicating our practices and dilemmas
PedPal Lit; Canada ChildChild Psychology Child; Non-U.S. Gov't Researcher-Subject Relations; Preschool Humans Interviews/methodsQualitative Research Research Support
Qualitative research studies have demonstrated that very young children can provide important insights into their daily lives and health experiences. Despite the shift to include children's perspectives in research and document principles related to good data collection with children, there has not been a parallel move within the scholarly community to lay bare the practical challenges inherent in conducting interviews with children. In this article, the authors consider the degree to which well-known standards for qualitative research apply to research interviews with young children. They make practical recommendations that build on existing theoretical work about the conduct of qualitative interviews with young children.
2005
Irwin LG; Johnson J
Qualitative Health Research
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732304273862" target="_blank" rel="noreferrer">10.1177/1049732304273862</a>
Interdisciplinary geriatric and palliative care team narratives: collaboration practices and barriers
Despite the development and implementation of team training models in geriatrics and palliative care, little attention has been paid to the nature and process of teamwork. Geriatrics and palliative care in the clinical setting offer an interdisciplinary approach structured to meet the comprehensive needs of a patient and his or her family. Fellowship members of an interdisciplinary geriatric and palliative care team participated in semistructured interviews. Team members represented social work, chaplaincy, psychology, nursing, and medicine. A functional narrative analysis revealed four themes: voice of the lifeworld, caregiver teamwork, alone on a team, and storying disciplinary communication. The content-ordering function of narratives revealed a divergence in team members' conceptualization of teamwork and team effectiveness, and group ordering of narratives documented the collaborative nature of teams. The study findings demonstrate the potential for narratives as a pedagogical tool in team training, highlighting the benefits of reflective practice for improving teamwork and sustainability.
2010
Goldsmith J; Wittenberg-Lyles E; Rodriguez D; Sanchez-Reilly S
Qualitative Health Research
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732309355287" target="_blank" rel="noreferrer">10.1177/1049732309355287</a>
Conducting a qualitative culture study of pediatric palliative care
While conducting a grounded theory study of Chinese American and Mexican American families' experiences in pediatric palliative care, we encountered a number of unanticipated challenges regarding project development, Institutional Review Boards, recruitment, data collection, and data analysis. In this article, we describe our experiences, strategies, and insights for the benefit of other researchers and clinicians in the field.
2009
Davies B; Larson J; Contro N; Reyes-Hailey C; Ablin AR; Chesla CA; Sourkes B; Cohen H
Qualitative Health Research
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732308327346" target="_blank" rel="noreferrer">10.1177/1049732308327346</a>
Living in the in-between: families caring for a child with a progressive neurodegenerative illness
adolescent; Child; Female; Humans; Male; Palliative Care; home care services; Pediatrics; Family; Adult; Canada; Emotions; caregivers; Neurodegenerative Diseases; Respite Care; Stress; Preschool; Adaptation; Psychological
Medical advances in recent years have led to an increased life span for children with progressive, neurodegenerative illnesses. The purpose of this hermeneutic inquiry was to explore the experience of families caring for their child at home. In-depth, audiorecorded interviews with six families (13 interviews) living in western Canada were transcribed and analyzed. The illness journey was revealed to be complex and unpredictable. We discovered many metaphors that spoke to the child's/family's life and explored the paradox of duality, such as holding both joy and sorrow, and containing both suffering and love. We outline implications for policy development within the area of respite care and coordination of services for families. The voices of families must be a vital component to influence and guide education and service development within the emerging specialty of pediatric palliative care.
2013-02
Rallison LB; Raffin-Bouchal S
Qualitative Health Research
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732312467232" target="_blank" rel="noreferrer">10.1177/1049732312467232</a>
Sibling Relationships Over the Life Course: Growing Up With a Disability
lived experience; Israel; qualitative; developmental disability; health; families; interpretive phenomenological analysis
The research explores sibling relationships, and the ways in which they are shaped over the life course by family members, in families with a lifelong disability. In-depth, semistructured interviews were conducted with 15 family units including a parent, a sibling, and an adult sibling with a disability. The content analysis revealed five sibling relationship patterns: (a) "Not a child, but a parent caretaker"-the parent-surrogate sibling; (b) "We somehow grew apart"-the estranged sibling; (c) "It is important for me to maintain some kind of distance"-the bystander sibling; (d) "When there's something they want to tell him, they always send me"-the mediator sibling; and (e) "I love him to death"-the friend sibling. These patterns of adult sibling relationships are discussed in relation to family dynamics, values, and legacies; recommendations for practice and research are made.
Avieli H; Band-Winterstein T; Araten BT
Qualitative Health Research
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049732319837228" target="_blank" rel="noreferrer noopener">10.1177/1049732319837228</a>
Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
adaptation; Adaptation; Adolescent; Anthropology; Brain Neoplasms/*psychology; cancer; Child; children; coping; Cultural; enduring; experiences; Female; health; Humans; illness and disease; Infant; lived experience; Male; meta-ethnogrpahy; metasynthesis; Method: interpretive methods; Parents/*psychology; Preschool; Psychological; psychosocial aspects; Qualitative Research; qualitative. Geographic: Taiwan; quality of life; Quality of Life/*psychology; resilience; Resilience; resistance; survivorship; Young Adult
The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents' and clinicians' concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP's perspective and one study also touched upon parents' concept. A conceptual model is presented. Normalcy (a "new normal") was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time.
Beecham E; Langner R; Hargrave D; Bluebond-Langner M
Qualitative Health Research
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049732318786484" target="_blank" rel="noreferrer noopener">10.1177/1049732318786484</a>
Health Care Professionals' Awareness of a Child's Impending Death
case study; children; decision-making; end-of-life issues; Midwest; professional; qualitative; theory development
Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs' initial awareness of a child's impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a "delicate dance of figuring out" key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.
Kobler K; Bell C; Kavanaugh K; Gallo A M; Corte C; Vincent C
Qualitative Health Research
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049732320911627" target="_blank" rel="noreferrer noopener">10.1177/1049732320911627</a>
Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study
child; article; controlled study; human; prematurity; palliative therapy; child parent relation; grief; uncertainty; bereavement; ethics; congenital malformation; morality; neonatal intensive care unit; infant; decision making; medical care; narrative
Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement.
Lakhani J; Mack C; Kunyk D; van Manen M
Qualitative Health Research
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener">10.1177/10497323231201023</a>