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1.
Int J Equity Health ; 23(1): 112, 2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38822383

RESUMO

BACKGROUND: Inequities in access to human papillomavirus (HPV) vaccine are becoming a growing critical issue globally. Few studies investigate the factors determining HPV vaccine uptake disparities when vaccine supply is constrained, especially in low- and middle-income countries. The aim of this study was to investigate inequities of HPV vaccination and related factors under the constrained vaccine supply in China. METHODS: A cross-sectional survey was conducted in a developed eastern coastal province and a developing western one in China between November and December 2022. Employing multistage stratified cluster random sampling, the study collected data from parents of children aged 9-14. Mixed-effects logistic regression models with school units as random effects were used for analysis. RESULTS: From 4,127 eligible parents (as vaccine decision makers for girls), 1,346 (32.6%) intended to vaccinate their daughters against HPV, of which 836 (62.1%) attempted to schedule a vaccination appointment. Only 16.4% succeeded in booking an appointment. More than half of the intended parents expected the imported 9-valent HPV vaccine. There were significant disparities in HPV vaccine awareness, intention, and vaccination behavior across educational, income, geographic, ethnic, gender, and health literacy levels. Vaccine awareness and intentions were higher among parents with higher socioeconomic status; however, girls from lower socioeconomic families were more likely to receive the HPV vaccine and had a higher domestically produced vaccination rate. Significant disparities exist in vaccination intentions and actual vaccination behaviors, primarily due to large supply constraints of the HPV vaccine. CONCLUSIONS: Sustained health education campaigns are needed to raise awareness of the HPV vaccine, improve health literacy, and decrease over-preference for the 9-valent HPV vaccine. A mother's HPV vaccination behavior was positively associated with increased intention and actual vaccination behavior for her daughter. This study advocates for complementary cervical cancer prevention programs targeting both mothers and daughters.


Assuntos
Infecções por Papillomavirus , Vacinas contra Papillomavirus , Humanos , Vacinas contra Papillomavirus/uso terapêutico , Vacinas contra Papillomavirus/administração & dosagem , China , Feminino , Criança , Estudos Transversais , Adolescente , Masculino , Infecções por Papillomavirus/prevenção & controle , Vacinação/estatística & dados numéricos , Vacinação/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Adulto , Disparidades em Assistência à Saúde/estatística & dados numéricos , Pais/psicologia , Fatores Socioeconômicos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Papillomavirus Humano
2.
J Health Care Poor Underserved ; 35(2): 619-635, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38828585

RESUMO

Parental educational attainment significantly shapes child socioeconomic status, potentially influencing various aspects of adolescent health. This study aimed to uncover the relationships between parental education and self-reported adolescent health outcomes, including overall health, mental well-being, and body mass index (BMI). Analyzing data from 1,448 participants in the Future of Families and Child Wellbeing Study, we identified notable associations. Our findings revealed that higher maternal and paternal education correlated with reduced odds of adolescent obesity. Furthermore, increased adolescent academic intention was associated with better overall and mental health in adolescents. Notably, it also played a mediating role in lowering adolescent BMI, thereby potentially explaining the association between parent education and adolescent BMI category (overweight vs. obese). These findings emphasize the significant impact of both parent education and adolescent academic intention on adolescent health. Future research should explore interventions leveraging academic intention to positively influence the health trajectory of adolescents.


Assuntos
Saúde do Adolescente , Escolaridade , Intenção , Pais , Humanos , Adolescente , Feminino , Masculino , Pais/psicologia , Índice de Massa Corporal , Saúde Mental , Obesidade Infantil/epidemiologia , Nível de Saúde
3.
J Health Care Poor Underserved ; 35(2): 636-657, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38828586

RESUMO

OBJECTIVE: To understand attitudes towards telemedicine and to further elucidate benefits, disadvantages, and visit preferences in a largely minority, urban safety-net setting. METHODS: Between 2020 and 2021, pregnant people, and parents of children younger than two years old were recruited from outpatient clinics. Interviews were conducted via phone, recorded, transcribed, and translated. Data were analyzed using content analysis. RESULTS: Seventy-four (74) individuals participated including 42 pregnant people and 32 parents. Most participants cited advantages to telemedicine including safety, convenience, improved access, and less disruption of work schedules, and wished to continue to have the telemedicine option available after the pandemic. CONCLUSIONS: Patients seeking care in safety-net settings, many of whom are working parents, noted that telemedicine improves access to care by providing an efficient and accessible option that overcomes barriers related to transportation and work schedules. Their experiences highlight the importance of continuing to offer telemedicine services.


Assuntos
Pais , Provedores de Redes de Segurança , Telemedicina , Humanos , Feminino , Gravidez , Adulto , Pais/psicologia , Provedores de Redes de Segurança/organização & administração , Masculino , Lactente , População Urbana , Adulto Jovem , Acessibilidade aos Serviços de Saúde , Pessoa de Meia-Idade , Atitude Frente a Saúde
4.
Perspect Biol Med ; 67(2): 197-208, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38828599

RESUMO

This paper examines the concept and moral significance of "childhood interests." This concept is important in medical decision-making for children and more broadly in the field of pediatric ethics. The authors argue that childhood interests are identifiable components of childhood well-being that carry moral weight. Parents have a special role in protecting and promoting these interests and special obligations to do so. These parental obligations are grounded by the independent interests of the child, as well as the good of society more generally. Because parents have these child-rearing obligations, they must also have the authority and wide discretion necessary to fulfill them. However, while parental discretion is wide, it is not unlimited, for it must be used to safeguard and advance childhood interests.


Assuntos
Pais , Humanos , Criança , Pais/psicologia , Tomada de Decisões/ética , Proteção da Criança/ética , Obrigações Morais , Educação Infantil/psicologia
5.
Perspect Biol Med ; 67(2): 209-226, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38828600

RESUMO

Recently published consensus recommendations on pediatric decision-making by Salter and colleagues (2023) did not address neonatal decision-making, due to the unique complexities of neonatal care. This essay explores three areas that impact neonatal decision-making: legal and policy considerations, rapid technological advancement, and the unique emotional burdens faced by parents and clinicians during the medical care of neonates. The authors evaluate the six consensus recommendations related to these considerations and conclude that the consensus recommendations apply to neonates.


Assuntos
Tomada de Decisões , Humanos , Recém-Nascido , Tomada de Decisões/ética , Pais/psicologia , Pediatria/ética , Tomada de Decisão Clínica/ética
6.
Perspect Biol Med ; 67(2): 227-243, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38828601

RESUMO

The consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making intentionally omitted adolescents due to the additional complexity their evolving autonomy presented. Using two case studies, one focused on truth-telling and disclosure and one focused on treatment refusal, this article examines medical decision-making with and for adolescents in the context of the six consensus recommendations. It concludes that the consensus recommendations could reasonably apply to older children.


Assuntos
Consenso , Humanos , Adolescente , Desenvolvimento do Adolescente , Pais/psicologia , Tomada de Decisões , Revelação da Verdade , Recusa do Paciente ao Tratamento , Feminino , Autonomia Pessoal , Masculino
7.
Perspect Biol Med ; 67(2): 244-260, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38828602

RESUMO

Legislation banning gender-affirming medical care (GAMC) for minors is inconsistent with the Consensus Recommendations for Pediatric Decision-Making (Salter et al. 2023). Gender dysphoria is a medical condition, and GAMC promotes adolescents' health interests. The evidence for GAMC is comparable to the evidence for other types of pediatric medical care. Parents are permitted to consent for similar risks in the treatment of other conditions. Evaluation of the potential benefits, risks, and treatment alternatives is contingent on individual patients' clinical conditions and adolescents' and their parents' values and preferences. Such decisions are within the scope of parental discretion and should be made through shared decision-making with health-care providers. Parents' declining GAMC does not inherently create a significant risk of serious imminent harm required to justify state intervention. Usurping parental discretion for GAMC is unjust: it treats this medical care differently than other comparable types of medical care without sufficient justification.


Assuntos
Disforia de Gênero , Humanos , Disforia de Gênero/psicologia , Disforia de Gênero/terapia , Adolescente , Tomada de Decisões , Feminino , Masculino , Pais/psicologia , Pessoas Transgênero/psicologia
8.
Perspect Biol Med ; 67(2): 277-289, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38828604

RESUMO

Pediatric intervention principles help clinicians and health-care institutions determine appropriate responses when parents' medical decisions place children at risk. Several intervention principles have been proposed and defended in the pediatric ethics literature. These principles may appear to provide conflicting guidance, but much of that conflict is superficial. First, seemingly different pediatric intervention principles sometimes converge on the same guidance. Second, these principles often aim to solve different problems in pediatrics or to operate in different background conditions. The potential for convergence between intervention principles-or at least an absence of conflict between them-matters for both the theory and practice of pediatric ethics. This article builds on the recent work of a diverse group of pediatric ethicists tasked with identifying consensus guidelines for pediatric decision-making.


Assuntos
Tomada de Decisão Clínica , Pais , Pediatria , Humanos , Pais/psicologia , Pediatria/ética , Criança , Tomada de Decisão Clínica/ética , Tomada de Decisões/ética
9.
Perspect Biol Med ; 67(2): 290-304, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38828605

RESUMO

In summer 2022, six points of consensus emerged from a symposium addressing the question, "In the context of U.S. pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?" (Salter et al. 2023). The authors of this statement wrote, however, that the points of consensus may require modification or may not apply in their entirety to children in state custody. This article addresses the consensus recommendations in the context of the thousands of children removed annually from the custody of their parents. While the consensus statements developed at the symposium provide a good starting point for decision-making in the context of these children, some alterations and nuance must be applied to attend to the specific needs of this population. The article works through what special considerations and changes ought to be made to expand the reach of the original points of consensus without neglecting the particular conditions of children in state custody, as well as their parents and caregivers.


Assuntos
Custódia da Criança , Humanos , Custódia da Criança/legislação & jurisprudência , Criança , Tomada de Decisões , Pais/psicologia , Pediatria/ética , Estados Unidos , Consenso
10.
Perspect Biol Med ; 67(2): 261-276, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38828603

RESUMO

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex's parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for Alex's developmental disabilities. Second, Alex's parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex's parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child.


Assuntos
Pais , Irmãos , Humanos , Irmãos/psicologia , Pais/psicologia , Criança , Masculino , Tomada de Decisão Clínica , Tomada de Decisões , Deficiências do Desenvolvimento/psicologia , Transplante de Medula Óssea
11.
Child Adolesc Psychiatr Clin N Am ; 33(3): 343-354, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38823808

RESUMO

Promoting active participation of families and youth in mental health systems of care is the cornerstone of creating a more inclusive, effective, and responsive care network. This article focuses on the inclusion of parent and youth voice in transforming our mental health care system to promote increased engagement at all levels of service delivery. Youth and parent peer support delivery models, digital innovation, and technology not only empower the individuals involved, but also have the potential to enhance the overall efficacy of the mental health care system.


Assuntos
Serviços de Saúde Mental , Humanos , Criança , Adolescente , Serviços de Saúde Mental/organização & administração , Transtornos Mentais/terapia , Pais/psicologia
12.
Int J Qual Stud Health Well-being ; 19(1): 2361494, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38824661

RESUMO

PURPOSE: To examine the lived experiences of children and adolescents coping with mental health issues and seeking mental health services in Saskatchewan during the COVID-19 pandemic. METHODS: In our descriptive phenomenological qualitative study, we interviewed forty-six individuals, including children aged 8-15 and their parents. Thematic analysis was applied to interpret the interview data. RESULTS: Our analysis identified three key themes: pyscho-behavioural impact, academic impact, and social impact. The pandemic adversely affected children due to factors like changes in behaviours such as increased screen time and decreased physical activity, limited access to mental health services, and disruptions to schooling and social interactions. Coping mechanisms varied, ranging from the utilization of available mental health supports and services to individual and family-based strategies. Disparities in timely access to mental health services were evident, with financially stable families accessing private services, while others struggled, particularly in rural areas. Families demonstrated resilience through parental efforts to seek balance and prioritize safety amidst COVID-19 challenges. CONCLUSIONS: Social connectedness served as a crucial buffer against pandemic-induced stress. Children faced difficulty in accessing timely mental health services and supports. Echoing participant experiences, our findings emphasize the urgency of targeted interventions and policy adjustments to address existing gaps in mental health service accessibility and availability.


Assuntos
Adaptação Psicológica , COVID-19 , Serviços de Saúde Mental , Saúde Mental , Pesquisa Qualitativa , Humanos , COVID-19/psicologia , Saskatchewan , Adolescente , Criança , Masculino , Feminino , SARS-CoV-2 , Pais/psicologia , Família/psicologia , Acessibilidade aos Serviços de Saúde , Adulto , Pandemias
13.
J Aging Stud ; 69: 101233, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38834248

RESUMO

Many adults face the difficulties of a parent living with dementia. Although not always caregiving for a parent living with dementia, they care about and are concerned for the vulnerability of their parent. This concern is invaluable but often an experience with a far-reaching impact. Qualitative research on filial concerns and experiences of caregiving has resulted in a vast body of knowledge about the experience of family carers. Far less research, however, has examined the moral concern of children. The aim of this study is to gain insight into the normative aspects of their concern. An international collection of 24 books written by adult children about their involvement with an ageing parent was analysed using the Dialogical Narrative Analysis method. Our study shows that the stories deal with children's moral questions about independence, identity, and suffering. These questions can be related to social imaginaries of individualism and progress. The two social imaginaries may have both positive and negative impacts on children's ability to cope with their concern for a parent living with dementia. The moral questions that arise from children's concern seem to originate from both the appeal of the vulnerable parent and from the social imaginaries. These moral sources may compete, resulting in moral friction. Children with a parent living with dementia deliberate upon the personal and societal held beliefs and need moral space to embody their concern.


Assuntos
Filhos Adultos , Cuidadores , Demência , Princípios Morais , Narração , Humanos , Demência/psicologia , Feminino , Masculino , Cuidadores/psicologia , Filhos Adultos/psicologia , Relações Pais-Filho , Pais/psicologia , Idoso , Adulto , Pesquisa Qualitativa , Pessoa de Meia-Idade , Adaptação Psicológica
14.
Pediatr Allergy Immunol ; 35(6): e14169, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38837464

RESUMO

BACKGROUND: Respiratory Syncytial Virus (RSV) is the leading cause of hospitalization in infants. RSV bronchiolitis is associated with an increased risk of subsequent wheezing. We aimed to document the parents' perception of the link between RSV infection and subsequent wheezing, wheezing-related healthcare and family resources use, and its impact on family daily life. METHODS: This cross-sectional online survey enrolled 1200 parents with at least one child ≤6y living in the United States, United Kingdom, Spain, and Italy. Children diagnosed with RSV bronchiolitis before age of 2 years were included in the RSV group, and those never diagnosed with RSV bronchiolitis in the Reference group. RESULTS: The odds of wheezing were 4.5-fold (95%CI 3.5-5.9) higher in the RSV than in the Reference group. The odds increased to 7.7-fold (95%CI 5.4-11.1) among children who were hospitalized, and 9-fold (95%CI 5.1-16.6) among those admitted to pediatric intensive care with RSV bronchiolitis. Similar trends were observed across all countries. In total, 57% of parents reported their child's wheezing to have moderate to severe impact on their emotional well-being, and 53% on their daily life activities and/or social life. 64% of parents reported moderate-severe impact of wheezing on child's quality of sleep and 49% and 46% reported a moderate-severe impact on their children's emotional well-being and physical activities. CONCLUSIONS: This survey suggests an association between RSV infection and subsequent wheezing in children across different countries. Wheezing, especially in association with RSV infection, was associated with increased healthcare utilization and costs, and significantly impacted parents' and children daily life.


Assuntos
Pais , Sons Respiratórios , Infecções por Vírus Respiratório Sincicial , Humanos , Estudos Transversais , Infecções por Vírus Respiratório Sincicial/epidemiologia , Pais/psicologia , Masculino , Feminino , Lactente , Pré-Escolar , Itália/epidemiologia , Inquéritos e Questionários , Espanha/epidemiologia , Reino Unido/epidemiologia , Estados Unidos/epidemiologia , Hospitalização/estatística & dados numéricos , Vírus Sincicial Respiratório Humano , Adulto , Criança , Efeitos Psicossociais da Doença
15.
BMC Anesthesiol ; 24(1): 199, 2024 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-38840039

RESUMO

OBJECTIVE: To investigate whether the surgical process information sharing system could alleviate the parental anxiety during a pediatric selective operation. DESIGN: Randomized controlled trial. METHODS: A questionnaire survey was conducted one day before surgery for the enrolled participants. Family members assigned to the intervention group received real-time process information sharing through service reminders during the surgical period, while the control group received standard perioperative education. The Pittsburgh Sleep Quality Index (PSQI) was used to evaluate sleep quality during the perioperative period, and the State of Cohesion-13 Scale (SOC-13) and Self-rating Anxiety Scale (SAS) were used to assess anxiety levels. Satisfaction levels during the perioperative period were assessed through a follow-up survey conducted one day after surgery. RESULTS: The intervention group showed better scores in terms of PSQI, SOC-13, SAS, and postoperative satisfaction levels at various time points compared to the control group, with statistically significant differences observed (P < 0.05). CONCLUSION: Real-time process information sharing is effective in reducing perioperative sleep disorders and anxiety among family members of pediatric patients, as well as improving satisfaction levels. This approach not only establishes a process and mechanism for effective doctor-patient communication but also helps implement continuous perioperative care, thereby optimizing internet healthcare services.


Assuntos
Ansiedade , Procedimentos Cirúrgicos Eletivos , Humanos , Masculino , Feminino , Procedimentos Cirúrgicos Eletivos/psicologia , Ansiedade/prevenção & controle , Criança , Disseminação de Informação/métodos , Inquéritos e Questionários , Adulto , Pré-Escolar , Pais/psicologia , Qualidade do Sono , Satisfação do Paciente , Família/psicologia , Período Perioperatório
16.
BMC Public Health ; 24(1): 1514, 2024 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-38840254

RESUMO

BACKGROUND: Mandates provide a relatively cost-effective strategy to increase vaccinate rates. Since 2014, five Australian states have implemented No Jab No Play (NJPlay) policies that require children to be fully immunised to attend early childhood education and childcare services. In Western Australia, where this study was conducted, NJNPlay legislation was enacted in 2019. While most Australian families support vaccine mandates, there are a range of complexities and unintended consequences for some families. This research explores the impact on families of the NJNPlay legislation in Western Australia (WA). METHODS: This mixed-methods study used an online parent/carer survey (n = 261) representing 427 children and in-depth interviews (n = 18) to investigate: (1) the influence of the NJNPlay legislation on decision to vaccinate; and (2) the financial and emotional impacts of NJNPlay legislation. Descriptive and bivariate tests were used to analyse the survey data and open-ended questions and interviews were analysed using reflexive thematic analysis to capture the experience and the reality of participants. RESULTS: Approximately 60% of parents intended to vaccinate their child. Parents who had decided not to vaccinate their child/ren were significantly more likely to experience financial [p < 0.001] and emotional impacts [p < 0.001], compared to those who chose to vaccinate because of the mandate. Qualitative data were divided with around half of participants supporting childhood immunisation and NJNPlay with others discussing concerns. The themes (a) belief in the importance of vaccination and ease of access, (b) individual and community protection, and (c) vaccine effectiveness, safety and alternatives help understand how parents' beliefs and access may influence vaccination uptake. Unintended impacts of NJNPlay included: (a) lack of choice, pressure and coercion to vaccinate; (b) policy and community level stigma and discrimination; (c) financial and career impacts; and (d) loss of education opportunities. CONCLUSIONS: Parents appreciation of funded immunisation programs and mandates which enhance individual and community protection was evident. However for others unintended consequences of the mandate resulted in significant social, emotional, financial and educational impacts. Long-term evidence highlights the positive impact of immunisation programs. Opinions of impacted families should be considered to alleviate mental health stressors.


Assuntos
Pais , Humanos , Austrália Ocidental , Pais/psicologia , Feminino , Masculino , Adulto , Pré-Escolar , Inquéritos e Questionários , Pesquisa Qualitativa , Criança , Vacinação/legislação & jurisprudência , Vacinação/psicologia , Vacinação/estatística & dados numéricos , Lactente , Pessoa de Meia-Idade
17.
Front Public Health ; 12: 1395682, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38846616

RESUMO

Introduction: The death of a parent can have profound negative impacts on children, and a lack of adequate support can exacerbate negative life experiences. Aim: To explore the influences of various actors on the content and execution of a bereavement programme within a Swedish context, considering relational and contextual perspectives. Methods: An ethnographic field study involving six children, their parents, and eight volunteers. A theory-inspired thematic analysis was conducted, methodically inspired by Braun and Clarke, theoretically inspired by Bourdieu's concepts of position, power, and capital. Results: Confidentiality obligation was an essential element in the programme, however, the premisses varied depending on actors' positions. Volunteers and researchers had different outlets to express their experiences in the program. The programme offered the children an exclusive space for talking about and sharing experiences and feelings. Simultaneously, the programme restricted the children by not allowing them to share their experiences and feelings outside the physical space. The physical settings shaped the different conditions for interactions among the actors. The sessions adopted loss-oriented approaches, where communication between volunteers and children was guided by the volunteers. However, children created strategies for additional, voiceless communication with their peers or themselves. During breaks and mingles, shared interests or spaces connected children (and adults) more than their common experience of parental bereavement. Conclusion: The participants in the programme were significantly influenced by the structural framework of the programme, and their positions within the programme provided them with different conditions of possibility for (inter)acting. Children's daily activities and interests were both ways to cope with parental bereavement and connect them to other people.


Assuntos
Antropologia Cultural , Luto , Pais , Humanos , Suécia , Feminino , Masculino , Criança , Pais/psicologia , Adulto , Voluntários/psicologia , Apoio Social
18.
Am J Occup Ther ; 78(4)2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38848283

RESUMO

IMPORTANCE: There is a need for tools to measure adults' playfulness in reference to parent-child joint play. OBJECTIVE: To (1) develop items for the Scale of Parental Playful Attitude (PaPA), (2) evaluate evidence for validity based on content, and (3) evaluate evidence for validity based on the response process. DESIGN: A mixed-methods design with three phases: (1) development of the first draft of the PaPA (based on the literature, focus groups, and semistructured interviews), (2) review by experts and revision of the first draft, and (3) cognitive interviews with parents. SETTING: Various (e.g., schools, a university). PARTICIPANTS: Phase 1 had 32 participants: 13 parents of children ages 2.5-6 yr without major diagnosed conditions; 8 parents of autistic children age 4-7 yr; and 11 preschoolers age 3-5 yr. Phase 2 involved 10 experts. Phase 3 had 5 participants: 3 mothers and 2 fathers of children ages 2.5-6 yr; 1 child was autistic. OUTCOMES AND MEASURES: Interview protocols and experts' review form. RESULTS: Phase 1 involved the initial item development. Extrinsic motivation and barriers to play emerged as important areas to include. Experts' review enhanced representation of the construct of playfulness. Content validity index values ranged from .78 to 1.00. Cognitive interviews provided insights into parents' comprehension of PaPA items. CONCLUSIONS AND RELEVANCE: Validity related to test content and the response process was supported. Additional sources of validity testing are necessary. Plain-Language Summary: Adult playfulness is critical for both the child and the parent, especially for developing a deeper connection. The Scale of Parental Playful Attitude (PaPA) assesses parents' self-perceptions of their playfulness when playing with their child. The study authors developed the PaPA (in both English and Spanish) to address a lack of tools for assessing how parents perceive their own playfulness relative to their child's playfulness. Understanding how parents perceive their own playful attitudes can create opportunities for occupational therapists to guide parents to approach play with an attitude that is as attuned as possible to their child's playfulness. Future validity studies are needed to support the clinical use of the PaPA.


Assuntos
Relações Pais-Filho , Pais , Jogos e Brinquedos , Humanos , Pré-Escolar , Masculino , Feminino , Criança , Adulto , Pais/psicologia , Reprodutibilidade dos Testes , Grupos Focais , Atitude , Psicometria
19.
J Nutr Educ Behav ; 56(6): 399-405, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38849192

RESUMO

OBJECTIVE: To describe the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) staff experiences, perceptions, and training needs surrounding the provision of infant feeding support for parents with intellectual and developmental disabilities (IDD). METHODS: We conducted in-depth semistructured interviews between October and November 2021 with Maryland WIC staff (N = 10) who provide infant feeding counseling and support. We analyzed interviews using conventional content analysis. RESULTS: Three themes were identified: identifying and documenting IDD, facilitating effective communication and infant feeding education, and assessing WIC staff competence and readiness. CONCLUSIONS AND IMPLICATIONS: The interviews suggested the need to explore the risks and benefits of routine and compassionate processes for identifying and documenting disability, create accessible teaching materials that facilitate understanding and engagement, and educate and train staff to provide tailored support in WIC. Engaging parents with IDD to better understand their perspectives and experiences should guide future efforts to improve inclusivity and accessibility.


Assuntos
Deficiências do Desenvolvimento , Assistência Alimentar , Deficiência Intelectual , Humanos , Feminino , Gravidez , Lactente , Adulto , Maryland , Pais/psicologia , Recém-Nascido , Masculino
20.
Health Expect ; 27(3): e14085, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38845158

RESUMO

INTRODUCTION: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer-focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important. METHODS: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically. RESULTS: Thirty parent carers were interviewed, 19 of whom had experienced a health-promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: 'self, identity and beliefs'; 'social connections and support' and 'health-promoting practices and outcomes.' Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. 'Self-identity' challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to 'social connections' reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of 'health-promoting activities' because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health-promoting activities of various kinds. CONCLUSION: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self-determination theory. PATIENT OR PUBLIC CONTRIBUTION: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co-ordinator (A. McD.) who is herself a parent carer. A study-specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co-authored by the team's Family Involvement Co-ordinator (A. McD.).


Assuntos
Cuidadores , Crianças com Deficiência , Pais , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Feminino , Masculino , Pais/psicologia , Criança , Adulto , Apoio Social , Pessoa de Meia-Idade , Entrevistas como Assunto , Adolescente , Nível de Saúde
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